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Endometriosis and Fibromyalgia Follow Up

Today’s Guest Blogger is Stacy.

stacy_blog1

Back on June 5, 2009 Stacy had written the post Endometriosis and Fibromyalgia. If you have not yet read it (including blog comments made back to it), I encourage you to do so as this post is a follow up to that one. In that post Stacy explained the inappropriate and hurtful comments that were made to her by doctors in her journey to obtain proper treatment of her endometriosis. One doctor in particular upset her by calling her “selfish” because she did not want to try to get pregnant at that time (see details in the prior post). In blog comments back to Stacy’s post, I related a story of a doctor who told me to “get pregnant to cure my endometriosis”.

There is no cure for endometriosis.

In any event, one comment in particular was made to Stacy’s guest blog that got her attention and prompted her to write this follow-up blog post. Stacy’s own life experience directly relates to the comments that were made to her previous guest blog. All endometriosis patients are not equal.

Here is Stacy’s follow up guest blog post to the post Endometriosis and Fibromyalgia

~~~~~

I recently posted on Chronic Healing with a short post that touched on my life with endometriosis and fibromyalgia. I appreciate that people took the time to post. One comment, in particular, caught my attention with a valid point that should be addressed. Why do women with endometriosis get appalled when told to get pregnant since it does bring relief to many people? I can only speak for myself and today I am tackling my pregnancy story. Having a child was something I always wanted to do and I am so blessed to have been able to have one. My child is the joy of my life. This child is a joy who was conceived in a loving family and is being raised by two parents who both understand that one of the pair is not always in peak form.

When I was married the first time I was in my early 20s and just starting my career. My then husband and I were fighting viciously about my endometriosis. I was in terrible pain all month long and lived for my next narcotic to try to numb the edge off the pain. I couldn’t drive because I was so fuzzy from the pain killers, I could barely sit all month long. In short, I was in agony. I did not just have monthly cramps. I was consumed with pain. I knew there was no way I could parent a child in that condition and I felt strongly that a child should be conceived in love and raised in a loving home and should not just be created because it might bring some relief.

I found a great OBGYN who was able to help me manage my symptoms. He and I tried many different things over the years with the understanding that pregnancy was not an option for me initially. Eventually, I got re-married and my husband and I decided to try to get pregnant. We were shocked when it happened right away. We were thrilled. I pictured myself with a cute little basketball tummy, fun maternity clothes, decorating a pretty nursery. What a shock to me that my pregnancy would turn out to be a nightmare. I spent nine months trying hard to maintain my pregnancy- much of it on bed rest. By bed rest I mean I had to lie on my left side and wear depends because I could only get up every hour to pee because my blood pressure was so high. I threw up my entire pregnancy which led to countless IVs, a pic line and a feeding tube. I had LPNs coming to my home to take care of me, was scheduled to see the doctor twice a week and was rushed to the emergency room regularly. The astronomical co-pays, despite our good insurance, for such a complicated pregnancy led us to sell our home, liquidate our retirement account and relocate to another part of the country to find higher paying work. It took us five years to pay off our medical bills. I vividly remember sitting with that doctor at one point and saying how thankful I was that this pregnancy was not done to “make me feel better” because the endo pain was worse than ever while I was pregnant and I couldn’t take anything.

Interestingly, my period is not as heavy as it was before I got pregnant, the pain is not as bad throughout the month and my cramps are not quite as bad. If I weigh that relief against the nine months of hell and the five years of fighting off bankruptcy I still come out on the side of being thankful that I chose to get pregnant when I felt ready to parent a person and I’m glad my child was created to be a person who can choose her own path to making the world a better place rather than being immediately assigned the job of making her mommy feel better.

- – Stacy


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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26 comments

1 Jannie FunsterNo Gravatar { 06.18.09 at 2:05 pm }

Wow, what a pregnancy story. I can’t imagine what she had to endure. But its seems to have been worth it in the end.

I wonder what physically caused Stacy’s endo to be less symptomatic after giving birth?

Jannie Funster’s last blog post..i winned! i winned!!

2 JeanneNo Gravatar { 06.18.09 at 3:00 pm }

Jannie,

Yes, Stacy had quite an experience alright. I remember going over to her place when the home health care nurse was there. I remember watching how complicated things were. The nurse gave a mini-lesson to Stacy’s husband regarding changing the IV bag or something. I don’t remember all the details. All I know is they showed him REALLY fast. It was definitely way under 5 minutes from start to finish. I remember being incredibly impressed that he was able to absorb and retain everything she showed him before she flew out the door. I honestly don’t know if I could have done it after watching the same mini-lesson he got. I’m good with medical stuff as far as reading about it in a book or knowing medical terminology but I am NOT good at hands-on stuff (like messing with an IV). So I was blown away at how well Stacy’s husband picked it up. I was amazed at how little time was spent showing him what to do. They spent zero time checking to make sure he understood. They literally showed him and took off. I was really surprised. Stacy was very, very, very sick during her pregnancy. Yes, she is very fortunate to have her daughter. One of the awesome things about Stacy is she really, really understands how fortunate she is and appreciates that fact. They were some scary times during her pregnancy and she is very grateful that she was able to maintain her pregnancy.

I couldn’t tell you why her symptoms are less severe after having given birth. I know she still has pain and that there are times it’s very severe. The lessening in pain severity she referred to is an overall pain reduction type of thing, based on what she has told me. (My pregnancy was not as complicated as Stacy’s by any means but it was definitely complicated). I myself have had an overall lessening of pain since. I still have had plenty of times where I ponder whether I need to go to the ER. It’s not like the pain is gone by any stretch of the imagination! Ovulation pain actually worsened after giving birth. However, I would say the menstrual cramp pain – for example – is not as bad for me overall now as opposed to before.

In my case, I have numerous other causes of pelvic pain (interstitial cystitis and pelvic congestion syndrome are just a couple). So it’s tricky to seperate out. Other symptoms of endo (bleeding problems such as hemorrhaging and cyclical rectal bleeding, sometimes with clots) certainly haven’t gotten better. In fact the cyclical rectal bleeding/clots never happened until after having given birth. Overall though, I would have to say my menstrual cramps are not as bad as they used to be before giving birth. However, it just occurred to me that I started acupuncture shortly after giving birth. So the reduction in that pain could be attributed to the acupuncture, now that I think of it!! (Goodness knows how much acupuncture has helped me with so many other symptoms)!!

In any event, no two women are alike and what helps one woman feel better can make another woman feel worse. So blanket statements tend to not apply to all.

Jeanne

3 Melissa RalstonNo Gravatar { 06.18.09 at 8:35 pm }

I can remember being appalled when my doctor suggested (prior to being diagnosed with endo) at the age of 17, that I just get pregnant as a way of helping my period “cramps” and “heavy bleeding”. At 17, I knew I was nowhere near ready to be a mother. I hadn’t been through university, had a career path established, or anything that I thought I would do prior to having children.

After my diagnosis with endo at age 23 and while I was searching for a doctor who could actually treat me, I had heard from several specialists that pregnancy would be a definite cure. Never mind that by this point, I had already suffered several miscarriages; a fact that seemed to be glossed over. I had one doctor who had the gumption to even say “If you were married, I’d tell you to have a baby, but since you’re not, how about a hysterectomy?” . As though a baby born out of wedlock was not worth being born at all (or at least that’s how I felt when he said that!).

My pregnancy with my son was complicated and something that I wouldn’t wish on anyone. I had gone into premature labour at 24 weeks, 31 weeks and 36 weeks. I had to have my cervix sewn shut. I spent 36/40 weeks of the pregnancy on bedrest due to the stress the pregnancy was placing on my body at the time.

After giving birth, my endo symptoms returned quickly full force. I had a lap done 3 months afterwards where I was not only diagnosed with stage 4 endo, but stage 1A endometrial cancer and had a fibroid removed.

As someone who is currently going through an “overly” complicated pregnancy, I can certainly identify with Stacy’s pregnancy story. I’m currently entering my 6 month of pregnancy and still waiting for that much promised relief that is supposed to come following the first trimester. I haven’t stopped having constant morning sickness and now I’ve started with having very low blood pressure. I’m going in to the hospital for twice weekly IV lines, an inconvenience at it’s politest word to the rest of my family since I can no longer drive. My doctor has all but ordered me to bedrest for the remainder of the pregnancy, but she knows that it will be impossible to do since I also must attend to my son’s needs, including his increased seizures.

At least now I know that I’m not likely to find relief once my cycles do resume. We will be moving forward to put [Editor's note: the names of the specific pharmaceutical drugs have been omitted here. Please consult with your physician regarding treatment options most appropriate for you.] and restart the __________ once I give birth. They are just hoping that I can make it to the 36 week mark before that happens.

Melissa Ralston’s last blog post..Coping with Physical Pain

4 Stacy AdkinsNo Gravatar { 06.18.09 at 8:43 pm }

I think, in part, my pain improved because I was so riddled with scar tissue that my organs were all twisted up and the pregnancy stretched some of the scar tissue. I am also vigilant about acupuncture appointments which has certainly helped me as well. I still have those middle of the night rushes to the emergency room due to the pain (despite ____________ and ____________ ) but I consider myself lucky that I can make it to work all but two days of my period each month. [Editor's note: the names of the specific pharmaceutical drugs have been omitted above. Please consult with your physician regarding treatment options most appropriate for you.]

5 JeanneNo Gravatar { 06.18.09 at 11:09 pm }

Melissa,

Wow. That doctor had an extra-special brand of audacity. He advised you to get pregnant at age 17 to help you deal with period “cramps” and “heavy bleeding” and you didn’t even have a definitive diagnosis for what was causing these symptoms? Wow.

It boggles my mind how prevalent this “pregnancy will cure” endo myth has been even into more recent years… despite scientific evidence that this is a myth. I am so sorry for your miscarriages, Melissa! I cannot imagine what you have been through having 9 miscarriages. I can’t even begin to understand. I would imagine Dr. Gumption really ticked you off. I’m so sorry.

Having heard detailed accounts from you regarding your pregnancy with your son, I feel so badly with what you went through. I know the details you’re providing here are only the tip of the iceberg. I am so sorry you had to go through all of that.

I am also sorry that your endo symptoms were so aggressive right after you had given birth. I can’t imagine how you felt when you got the news 3 months out that you had Stage IV endometriosis AND endometrial cancer… plus a fibroid removed for good measure.

Yes, I can only imagine you were able to relate to Stacy’s story. Having heard quite a bit about each of your stories, I know there are some parallels. I know you have had too many hospitalizations to count with your current pregnancy. I know you just had unanesthetized surgery to remove a partial blockage in your intestines, during a colonoscopy, while pregnant. I know that you vomit a lot! I know that you are a very brave woman! I know the blood pressure has caused many unfortunate fainting episodes. I know the hospital isn’t a hop, skip, and a jump away for you. I know that your son’s seizures are serious and frequent and I marvel at how you are managing everything so well!

I am happy that you have talked with your doctors, established a plan you’re comfortable with, and are doing everything in your power to make it to the 36 week mark.

I admire your courage, tenacity, strength, and spunk. From talking with you daily, I know that your sense of humor is one of your best coping mechanisms! You inspire many others and you inspire me!!

Love,

Jeanne

6 JeanneNo Gravatar { 06.18.09 at 11:19 pm }

Stacy,

That makes sense because I know about your history with scar tissue. It also absolutely makes sense that the acupuncture has helped you! (I know it certainly helps me)!!! Unfortunately, those ER situations don’t magically disappear but, as you said, being able to work as much as you do is something to be thankful for. (Not all endo – or other chronic illness patients – are so fortunate).

Stacy, thank you so much for sharing your experiences! You have been through so much and I’m a firm believer in sharing our stories to help each other (as I know you are too). Your efforts here at the local level before you moved away were amazing and it’s a real treat to have you guest blog here. You are a great role model for other chronically ill patients. So thank you for your time and effort guest blogging!

Take care and I’ll talk with you soon.

Miss you,

Jeanne

7 AvivaNo Gravatar { 06.18.09 at 11:54 pm }

I had a mild case of endometriosis diagnosed in my mid-20s. I was lucky — one lap to clean things up and I didn’t really have problems again for more than 15 years: after I became a mom.

My OB told me that it’s normal for women’s periods to change after giving birth. For some, they get lighter and less crampy. For ones like me, they get very heavy and intensely crampy. (Although still not to the level the rest of you are suffering — I’m so sorry you’ve all had to deal with this!) She says that the only thing that’s typical across the board is that they CHANGE.

Anyway, fwiw, I thought I’d share that. I’m glad that some of you have gotten at least some relief after childbirth!

My SIL has very severe endo and was unable because of it to get pregnant. (Too much scar tissue.) She tried for many years, and the docs who had the gall to tell her to just get pregnant and that would “cure” her just broke her heart because she wanted to more than anything else. :-(

Anyway, I’m rambling here, sorry. Just wanted to share the teensy bit of info I thought might be of interest and express my sympathy at the a**es some doctors are.

Aviva’s last blog post..Post-Op Visit: Good; Clotting Ability: Poor

8 AmandaNo Gravatar { 06.19.09 at 1:22 am }

Wow I cannot imagine having to go through such a nightmare pregnancy… and then having to pay for all the treatment, I mean we complain about the state of the NHS sometimes but at least we get free medical care no matter what. I’m glad to hear that you, Stacy, have noticed some improvement in pain and that you chose to have a child because you wanted one and felt ready for one rather than because it “might help” with the pain. It’s a tough one endometriosis and pregnancy – my mum had my sister and me and feels terribly guilty on two accounts – one that she was so messed up physically and emotionally when we were kids that sometimes she couldn’t cope and had to send us out with my dad (she’d watch us through the window in tears that she couldn’t be with us at that time) and secondly that she has “passed” the endo on to me and my sister also has problem periods but no diagnosis as yet. There’s no reason why she should feel guilty and I tell her so constantly, but she is still racked with guilt – so in that respect the idea of getting pregnant just to see if it helps could cause far more problems if it doesn’t help or makes things worse. Thanks for the post, it was interesting to read and very thought-provoking!

Amanda’s last blog post..The Importance of Dreams

9 JeanneNo Gravatar { 06.19.09 at 10:10 am }

Aviva,

I’m glad you had some remission time. I’m sorry that it had to come to an end for you.

My experience was a mixed bag. My ovulation pain got way worse. My menstrual cramps got better overall. Other symptoms worsened. Yes, this did change things for me. It sounds like I’m not alone in that department.

Thank you for sharing that. Yes, some relief is better than no relief (even if it does get replaced by more problems than before). In my case, a number of diagnoses rapidly followed having given birth. I had a lot hit me at once. It was quite intimidating.

I am so sorry for what your sister-in-law has experienced. Infertility is brutal enough without ignorant doctors telling her to just get pregnant to “cure” her. It never fails to amaze me that a doctor would “prescribe” pregnancy to “cure” endo when that is a myth AND the very endo patients who are told this may well be infertile! It’s rubbing salt in a wound, if you ask me. There are many articles and resources on infertility on my blog. Please share my link with your sister-in-law if you think it might be helpful for her. The infertility page (see upper left under navigation) has links to lots of infertility resources!

You’re not rambling. Your comment was very helpful. :)

I appreciate you sharing and, yes, some doctors really have room for improvement!

Take care,

Jeanne

10 JeanneNo Gravatar { 06.19.09 at 4:31 pm }

Amanda,

She really had a rough time. Yes, your healthcare system does induce envy from people like me. Our finances have been decimated by medical bills. Yes, Stacy stood up to those misguided doctors who tried to intimidate her into trying to conceive. She knew it wasn’t the right time for her to try that.

It’s too bad your mother feels guilty about her own health problems… and about you and your sister having endo (or suspected endo) that she “passed” to you (and possibly your sister). So, your sister isn’t officially diagnosed? It’s too bad your mom feels guilty for things she can’t control. :( I’m glad you liked the post.

Jeanne

11 KristenNo Gravatar { 06.19.09 at 7:31 pm }

I just wanted to thank you so much for coming by the other day and sending positive thoughts!! Thank you for the story of your own heart issues….hearing things like that helps!!

Kristen’s last blog post..Catching up (6/19/09)

12 JeanneNo Gravatar { 06.19.09 at 11:36 pm }

Kristen,

I stopped by your blog after hearing about you on Alicia’s (Yaya Stuff) blog. Once I read your post, I thought explaining my situation/history might give you a bit of comfort. Thanks for stopping by here!

Jeanne

P.S. For my regular readers who are scratching their heads because they don’t recall hearing me mentioning all of the cardiology workups I’ve had done, it’s one of those things I’ve never blogged much about because I was focusing on writing about other conditions. If you’re curious about what Kristen was referring to above, her “Dr. Appt. (6/16/09)–UPDATED!!” post talks about a situation with her daughter’s cardiologist appointment and I had posted a comment back to it regarding my own encounters with cardiologists.

13 YayaNo Gravatar { 06.20.09 at 1:56 pm }

Yes, thank you for pointing this out. Pregnancy does not make all endo patients symptoms dissipate. This is another bit of false info out there in the endo world that people should be aware of. How daunting would it have been had you gotten pregnant earlier to “cure” your endo and ended up in the pregnancy situation you had?

Yaya’s last blog post..Friday Fragments/Focus Friday

14 JeanneNo Gravatar { 06.20.09 at 8:50 pm }

Alicia,

It really is important for us to keep working to bust the “pregnancy cures endo” myth. Just when the myth seemed all but dead, it seems to be resurfacing a bit more in recent years. It’s a myth that needs to be called out.

Jeanne

15 Melissa RalstonNo Gravatar { 07.04.09 at 9:11 pm }

Selfishness. It’s a word that has been tossed my way quite a few times lately and at times I wonder if I am being a bit selfish. I’ve always dreamed of having a big family. I envision myself with 4 children. Out of 11 possible children, I have one living child (currently pregnant with what will likely be my second living child). I have been told by my doctors, who I trust with all my life, that it would not be advisable to have another child. My body has been through enough this time through, with twice weekly IV treatments and sudden ER trips due to the complications.

Which brings me to the selfish part. Prior to the pregnancy, while I was ttc, I was told that I should be happy with what I have been blessed with; one amazing little boy. Don’t get me wrong, my son is by far my pride and joy and I don’t for one minute doubt how lucky I am to have had him. The endo specialist who did the surgery three months after he was born clearly was shocked that I had managed to conceive and carry to term with the condition that my reproductive system was in. The severity of the endo, combined with the cancer explained the many miscarriages that I had experienced. I can’t imagine going through this at a younger age than I had been at the time (19-23), as I know some young ladies (17-18) have often expressed that they need to get pregnant right away or else they will suffer from empty arms. Even at 19, I had felt that “now or never” feeling when doctors told me that my uterus was “quite scarred”. It was never explained to me what this meant or what could have caused it. My first miscarriage was a result of this scarring, when the placenta attached to the unhealthy area and eventually tore away (placenta abruptia). The pain of miscarriage is very real and yet not understood by many. It is minimized and attempted to be swept under the carpet with the cruel comments that Stacy mentions. By far one of the worst comments offered to me was “At least you already have a child, you can always try again later”. As if this child wasn’t already real to me, that the loss wasn’t real and I wasn’t welcomed to be in a state of grief, at least around this person. I’m wondering if Stacy’s doctors would have told me that I was still being “selfish” for not giving my partner a child after I had miscarriage number 6 and doubted my desire to go on with ttc. Of course I eventually did go on, but each loss was also a source of tension between me and my ex. Eventually the repeated miscarriages just destroyed the relationship. I conceived and carried to term, ironically enough, as the relationship was imploding. Infertility and miscarriage can be a huge source of conflict, and can lead towards feeling more self-blame. At times I did blame myself for the miscarriages. It’s hard not to have the thoughts of “what if I?” but you just can’t let those thoughts register or else they eat you alive.

With the current pregnancy I am also being “selfish”. I know that pregnancy puts an extra source of strain on me physically as I only have one functioning kidney that doesn’t even function at 100%. But I couldn’t count on the pregnancy being *this* horrible. Someone within the network of people I deal with regularly, actually asked me “How are you going to raise a child when you are in so much pain all the time?” and “I have no idea how you are going to manage to have a baby when you can’t even deal with your son’s own problems” (my son has intractable epilepsy). It’s hard not to feel selfish when I have had to rely on my family to give up so much in order to be able to get me through this pregnancy. My parents just recently cancelled a trip to our cottage out east, in order to be able to take me the 1.5hr drive to the hospital twice a week. Today I had to call them and disturb them while they were out and about to do something fun with my son, in order to come to the hospital. Obviously, I’ve now been released but the thought at the time was that i was likely going to be admitted. My partner hates the hospital and I wouldn’t want to force him to stay, so I was hopeful of one of my parents staying with me. It hurts to think that my desire to have another child is forcing so much stress on others in my life. In that way, I do feel selfish for going through this. But then as I mentioned, having multiple children has always been my dream.

I also feel selfish when I look towards the future. In a heartbeat I would tell anyone who asks that I would do this again, hands down no questions asked. It gives me a great inner sadness that it isn’t recommended that I go through this again from a medical standpoint. But then, would I want to place my two children through this again? Would I want to force my partner to be the sole income earner for another extended period of time? Would I want to force the stress of wondering what’s going to happen with me on him, my parents, my friends? Would I want my children to again (for my son) to witness mommy being extremely sick, fainting and believing that I was going to die? My son has witnessed mommy not moving in response to him, he will say to others that “mommy has faints” as though it’s a normal thing. He’s 5.5 years old and has had to call his grandmother to say that he thinks his mommy is dead. It breaks my heart even as much as the thought of not having another child. I cannot put him through this again. Even though he asked Santa last Christmas for a brother or sister, there will be no more asking of Santa or the Easter Bunny for these gifts!

In closing, I often say the following to people in my group in regards to infertility: “Some children are born biologically to us, others are scattered throughout the world for us to find”.
.-= Melissa Ralston´s last blog ..Endo and CMP =-.

16 JeanneNo Gravatar { 07.06.09 at 11:27 am }

Melissa,

You have every right to dream of having a big family. I know what I dreamed didn’t work out (as far as family size) and it hurts. I don’t think I’ll ever get over it. You are obviously a very determined person. You’re the only person I’ve ever met who has had nine miscarriages. Many people would not have been able to keep trying to conceive but you did so. Needless to say, it becomes tricky when doctors advise against having another child. With the severity and number of complications you’ve had with this pregnancy and the nine previous miscarriages, one can understand why they would advise against trying to conceive again. That does not mean you are “selfish” to have wanted another child. It’s not anyone else’s place to pass judgment on you about whether you should or should not have tried to conceive another child. I know, from talking with you, that this isn’t just about you being fixated on a specific number of children. I know you wanted very much for your son to have a sibling. I understand this desire very much because I desperately wanted a sibling for my child. In my case, that’s not going to happen. It makes me sad but I have accepted it. I don’t like it. I don’t think I’ll ever really “get over it”. However, I accept it.

When you are in the kind of extreme, unusual circumstances you’re in, sometimes words like that (“selfish”) will fly. It is what it is. Now, at the same time… you said yourself that your “doctors, who I trust with all my life, said that it would not be advisable to have another child”. So, it sounds to me like you recognize that you are not only in a very-high-risk pregnancy now (for multiple reasons) but that any future attempts at conceiving could be life-threatening. There is a HUGE difference between labeling someone selfish for making informed, albeit quite risky, choices regarding family planning… and trying to reason with someone that may actually be putting their life in danger with a decision.

Now, my personal belief is that no one should EVER tell anyone to “be happy with what they’ve been blessed with” as far as children are concerned. This type of commentary is spectacularly unhelpful! Wishing for another child despite such commentary does not equate to the word “selfish” in my book. I have a friend who had 2 boys. She and her husband desperately wanted a third child. She had had a miscarriage in the early years and she was found to have a thyroid problem. I believe she also has PCOS. However, they were able to have these two wonderful, sweet, thoughtful, polite boys. They wanted one more child. The few people they discussed their desires with made comments such as, “be grateful for the two sons you have”. This did not deter them. Sadly, it just made them feel the need to be much more selective in who they shared their dreams with. After 9 years of trying to conceive, they did. Their 3rd son is now two years old.

Wanting to have another child does not make you any less grateful for the child you have.

In your case, you have doctors advising against trying to conceive again and you have cancer that is untreated since you are pregnant and unable to use the medication needed to treat it. This is beyond some random people telling you to be grateful for what you have! This is the idea the future pregnancies could put your life in danger. The latter is a whole different story. It saddens me that doctors instill “now or never” fears regarding pregnancy into 19 year olds. That is a LOT of pressure to be under at a young age for a big responsibility. Yet it also disturbs me when women aren’t fully informed of what’s happening with their bodies.

Miscarriages are very poorly understood. Our society does a horrendous job of supporting those who have had miscarriages. It is minimized/swept under the carpet, by society as a whole, and this is terribly unfortunate. Our society needs to be far better educated regarding how common miscarriage is, how best to help the grieving couple, how to acknowledge that there IS a grieving process, etc. Our society has a long way to go on this.

The comment you referred to, “at least you already have a child, you can always try again later” is as offensive as if someone lost a living child and a person walked up to them at the funeral home and made a comment like that… as if children are easily replaceable!

You make a good point that you could be accused of being selfish for trying to conceive amidst risks but you could also be accused of being selfish for not giving your partner a child after you had miscarriage number 6 and doubted your desire to go on with trying to conceive (at least with a doctor like Stacy’s who makes such terrible comments, anyway)!

While you did choose to go on trying, who could blame you if you have decided differently?

Yes, infertility and miscarriage can be a huge source of conflict and can lead towards feeling more self-blame. This is very common. I have met too many people to count who have gone through this.

It makes me sad (even though it seems universal among women who miscarry) when I hear women blame themselves for the miscarriage. It just makes me sad because it seems like self-torture to engage in self-blame. I do understand the “what if” thoughts do pop up. I just feel terribly that anyone has to blame themselves for something that is so painful to start, not their fault, etc.

You had no way to know all of the things that have happened would happen. Being a chronically ill parent is a challenge and a balancing act that makes parenting as a healthy parent look easy by comparison, I think. You are strong and you will work things out. It may not always be easy or fun. You may have to scout out reasonably priced child-care nearby for those days you are so sick you just need some time to rest. But you will get by. While the comments sound like they hurt you, the person asking them may have been asking out of concern(?)

Your parents have been tremendously supportive and that’s great. I know you’re sad they canceled their trip but they clearly want to help you and they know how sick you are. If you need to call them to the hospital, that’s what you need to do. You do what you need to do.

With your partner hating the hospital, it does put more pressure on your parents in this case.

That leads to some tricky territory. (We’ve talked about this before). Far be it from me to EVER try to tell anyone what they should or shouldn’t do regarding having more children. It is not my place to say! That said, you are well aware that this affects multiple people. I know firsthand how strong the desire to have more children is. (Ask my husband about my logic, or lack thereof, regarding this issue a few years back. I absolutely get it).

Of course it makes you sad that medical advice is contrary to your dreams of a big family. That stands to reason. It is a grieving process. (I’m still grieving many years out).

I think as far as the rest of your questions are concerned that perhaps you’ve answered your own questions.

It certainly must be traumatic for a 5.5 year old to think “Mommy is dead” when you’ve fainted. You know after this pregnancy what the odds would be of another equally difficult one. Right?

So with Santa and Easter Bunny, it sounds like you have answered your own question. Trust me, I have had my heart ripped out by being asked to produce a sibling. I know what that conversation feels like. It’s not fun. Trust me. I will never forget the sickening feeling of that conversation.

Melissa, I think your blog comment was thinking out loud more than anything. I hope my reply is helpful in some way. I truly believe it’s not my place to give anything even remotely resembling “advice” but, as I said earlier, I really believe you answered your own questions.

Thinking of you!!

Jeanne

17 KatieNo Gravatar { 12.17.12 at 5:58 pm }

Hello all. I have not been formally diagnosed with Endo, but it was mentioned back when all my symptoms started (when I was 13.) I have just recently been diagnosed in Fibromyalgia after 9 years of suffering through the pain. As for the Endo, ever since I was 13 I’ve had chocolate cysts that used to drain themselves around menses. At the time, the only way to know for sure if it was Endo was surgery to look for lesions, which they weren’t willing to do for me at such a young age. My doctor at that time did mention that pregnancy could force it to “work itself out.” At 13 years old! I need to get into the gyno to get checked up on again, but since getting diagnosed with Fibro, my doctor has been messing with my meds to try to find something that works for me. This last time left me feeling even worse and I have exhausted my PTO for the year. My doctor also only approved my FMLA for 6 days per year. I had 7 days in the last month while on this medicine! So needless to say, if I want to keep my job, I can’t have any appointments until next month when my PTO restarts. I also have to come into work even if I can barely function. I hope to find some relief eventually. I am 22 and newly married, and I cannot afford not to work. I wish the best of luck to all of you!

18 JeanneNo Gravatar { 12.18.12 at 5:23 pm }

Welcome Katie!

I am really sorry for everything you’ve been through! It greatly saddens me that so many people struggle so hard to be properly diagnosed and treated. Having fibromyalgia myself, I know how painful it can be. As far as endometriosis is concerned, I’m unclear as to how your doctor has made conclusions about things like chocolate cysts without having performed a laparoscopy to confirm a diagnosis? You mentioned “at that time, the only way to know for sure if it was endo was surgery to look for lesions”. I’m confused about what your doctors have told you… because that is actually still the case. Laparoscopy is still considered the definitive means for diagnosing endometriosis.

It is totally appalling to me that a doctor told you – at 13 years old! – that pregnancy could force endometriosis to “work itself out”. That is incomprehensible to me even though I’ve heard such things before over the years. It just keeps appalling me each and every time I hear it.

I am really sorry you’ve exhausted your personal time off. I don’t understand the mere 6 days/year your doctor approved for FMLA. It was my understanding that the whole point of FMLA is to have up to “12 work weeks of unpaid leave during any 12 month period”.

I understand that selecting physicians is a very personal matter but I can’t help but wonder if it might be worth your while to get another opinion because it doesn’t sound like this doctor understands how sick you are. I understand that medical appointments take time away from work. It just seems like maybe finding a doctor who truly understands how sick you are would be worthwhile in the end. For example, if you took some unpaid/FMLA time (i.e. while getting your medication adjusted), you might find that you eventually don’t need as much time off of work as you have needed lately. In the long run, it might be worth taking the unpaid FMLA time to get things sorted out so that you don’t wind up losing your job over factors out of your control.

You probably wouldn’t be able to be seen by a new doctor for another opinion any sooner than next month anyway. I know for my specialist it took several months to get in but it was well worth it in the end. I’m sorry you have been going to work when you can barely function. Having been there myself, I know how awful that is! Please don’t give up hope for relief. It took me a long time but I eventually assembled the right team of doctors and combined it with the right “alternative therapies” that work for me. I can honestly say I’m in far less pain, overall, now than just a few years ago. I know of other women who have had this experience too. It can happen.

I’m guessing all of this is difficult on your new marriage. The better your spouse understands your situation, the better it will be for both of you. I hope you’ll take a look around my blog because there are a great many posts on fibromyalgia, endometriosis, chronic pain, etc. You might find them helpful. I hope you’ll keep in touch. Thank you for your feedback. Best of luck to you!

Jeanne

19 endochickNo Gravatar { 12.18.12 at 5:39 pm }

Katie,

I’m sorry you’re dealing with pain, and going through the horrible difficulties of being undiagnosed. Jeanne, and others here, can more effectively comment on the fibro. I don’t have this condition.

As for endometriosis, I, too, experience the pain of this condition at an early age and was told to “get pregnant.” Doctors were unwilling to perform a diagnostic lap or treat with anything other than birth control pills — which did nothing other than make me sick — because I hadn’t had a child. One doctor claimed having a child would pretty much cure me if I had endometriosis! Guess what… it didn’t!

Jeanne is right concerning FMLA. You should be able to claim up to 12 full weeks per year PER CONDITION. If your doctor isn’t willing to allow you to claim that (that means give you a letter for your employer stating you may need this time in one calendar year), then I would get another opinion quick.

Please consider getting a second opinion, having your FMLA letter reflected with the full 12 weeks to protect your job and get a diagnostic lap. If it’s discovered you have endometriosis, then you will want two letters for FMLA filed with your human resource department. One from your treating physician for the endometriosis listing the staging of disease, symptoms, treatments being used and reason why you would be out of work. Then you would get one from your rheumatologist for the fibromyalgia for the same thing. Both should allocate 12 weeks per calendar year. No less. If you doctor argues that you don’t “need” the full 12, tell him or her that’s it is your right and you would like that buffer for your protection. After all, just because it is there doesn’t mean you have to use it. Remember, FMLA time is unpaid leave.
endochick´s last [type] ..Dizzy Dysautonomia

20 JeanneNo Gravatar { 12.18.12 at 7:09 pm }

Endochick:

Thank you for your helpful comments for Katie!!

Jeanne

21 KatieNo Gravatar { 12.18.12 at 7:30 pm }

Thank you for your comments. My rheumatologist was great at first. Then when I didn’t take to this new med (which is _________ by the way), I could not get ahold of him. My managers helped me set up my claim for fmla, and had unum get in touch with him. It took him awhile to even send anything in for my certification, and when he only authorized 6 days per year (plus one day every three months for treatments) unum called me to let me know. I still can’t get ahold of him and my next appointment isn’t until February. As for the Endo, my doctor at the time felt for the cysts with an exam, and scheduled an ultrasound. As for determining that they were chocolate cysts, like I said, they would drain every month. I thought the brown discharge that came with my period was normal, but then my mom saw it and took me into the doctor. They tested it and it was old blood and tissue. And the doctor said it was drainage from the cysts which she could tell because they shrank and regrew every month. What I meant by surgery was abdominal surgery where they completely open you up. Either they didn’t have lap back then or my doctor didn’t do them. Lap is much safer and faster recovery. Lately, I have been having intense pain in my lower right abdomen. It hurts during sex, when I’m having a BM, and sometimes just when I move. With IBS, I’m no stranger to constipation and being full of gas. But I’ve taken milk of magnesia and have had no relief. I also am able to pass gas and have a BM 2-3 times per day.

[Editor's note: the names of any specific pharmaceutical drugs have been omitted above. Please consult with your physician regarding treatment options most appropriate for you.]

22 JeanneNo Gravatar { 12.19.12 at 3:23 am }

Katie:

Thank you very much for the additional information about your situation! :)

Before I continue, let me take a moment to refer you to my disclaimer.

Before I proceed with any more comments, let me just say that I don’t mean to throw a lot of information at you all at once – but it doesn’t sound like you are getting the time off work that you’re entitled to by law and I am confused about what the doctor is telling you about endo too. So, I realize my comments below may sound kind of blunt – but I am trying to cut to the chase because you have a lot of issues going on and I want you to get relief/help ASAP. So, here goes…

Below is a recent New York Times article that talks about endometriosis:

This link talks a little bit more about the various ways doctors can narrow things down (i.e. things that may lead them to suspect endometriosis) as opposed to the definitive means of diagnosing endometriosis, laparoscopy. (When the definitive means for diagnosing endometriosis is written about in the literature, it is very common for laparoscopy to be the only term mentioned. Technically speaking, a laparotomy (major surgery with an open incision) could also enable the surgeon to obtain tissue samples for biopsy that could confirm or rule out endometriosis. Since laparotomy is much less common than laparoscopy for diagnosing and treating endometriosis, most literature simply uses the laparoscopy term. The key to proper diagnosis lies in the biopsy of the tissue as a means of identification.

While it is certainly possible for a doctor to suspect endometriosis based on non-surgical means, the only definitive means for diagnosis of endometriosis is surgery. I have had 6 laparoscopies and 1 laparotomy. I am definitely not trying to “beat a dead horse” about the fact that surgery (generally laparoscopy) is the definitive means for diagnosing endometriosis. The only reason I had a laparotomy was that I had a whole host of other issues going on besides endometriosis (which had been previously diagnosed by laparoscopy) and my surgeons could not accomplish what they needed to do via a laparoscopy. They needed a larger incision. Again, though, that was for addressing issues other than endometriosis. (That surgery was performed by both my colorectal surgeon and the doctor who was removing my endometriosis. They worked as a team. During surgery, they found cancer as well). Most commonly, though, endometriosis patients (or women suspected to have endometriosis) have laparoscopy to confirm the diagnosis rather than laparotomy.

As far as the discharge you mentioned, I facilitated an endometriosis support group from 2001-2008 and this topic came up at a meeting. Many of the women at that meeting had experienced the dark discharge you mentioned, including myself. Not all of them had a history of ovarian cysts of any kind. I have lived with endometriosis since I was 13 and I’m now 43. I have never been found to have a chocolate cyst. I’ve had ovarian cysts that were not endometriosis. However, the endometriosis I’ve had removed in surgery after surgery was not located on the ovaries. Ever. Yet I have certainly had the dark discharge you described. I am confused as to why your doctor would conclude that you have chocolate cysts (endometriosis) without doing a biopsy (during surgery)?

I obviously can’t speak to what tests they did in your case. I have interacted (either in person or online) with hundreds of endometriosis patients and never heard of such testing. I’m not really sure what to make of that. I just keep coming back to the fact that reputable organizations that deal with endometriosis regularly assert that surgery is needed to definitely diagnose endometriosis.

If I were in your shoes, I’d consider getting a second opinion based on that alone. Again, I know that selecting physicians is a personal matter. I am just concerned about you getting a definitive diagnosis so that you can get the best treatment possible. Brown discharge is not normal in my book and you very well might have endometriosis. Without the definitive diagnosis that surgery provides, though, I don’t know if you’ll ever be sure what’s happening. I just don’t want you misdiagnosed or given inappropriate treatment (in light of any uncertainty of the diagnosis, for example).

I know surgery can be a scary word but if you DO have endometriosis, surgery provides the opportunity for the endometriosis to be removed. (If contemplating surgery, having a highly skilled surgeon who treats many endometriosis patients is crucial).

While ultrasound can be used as a tool to track ovarian cysts in previously diagnosed endo patients (in the form of the classic chocolate cysts many endo patients have), surgery is what provides the surgeon with the opportunity to perform a biopsy of the tissue.

I’m glad your mom is supportive of you and that she has helped you to pursue answers. It’s always helpful to have the support of loved ones in these matters!

Going back to ovarian cysts, it is my understanding from talking with my pelvic pain specialist that any menstruating woman can potentially have ovarian cysts that change in size throughout the cycle but that are not necessarily endo. This discussion came up because I had a large cyst removed during surgery that was biopsied and shown not to be endo but to be a “normal” ovarian cyst (not cancer, not endo).

Again, it’s certainly possible that you do have chocolate cysts. My concern is that if your doctor labeled them as such without surgery then it’s possible they are not.

As far as laparoscopy vs. laparotomy is concerned, a laparoscopy is considered minor surgery (nearly always outpatient) and a laparotomy is considered major surgery (large incision, longer recovery time). If you have any questions about either of these, just let me know because I’ve had both. Laparoscopies have been around since before you were born. So, your doctor may not have done them? I don’t know. If you decide to look into having a lap and if your doctor doesn’t perform laps, it is very important to find a doctor who does lots of them and who really knows endo. The more experienced the doc is with endo recognition/removal, the better.

I am really sorry you’re having so much pain! Given the severity of your pain and its impact on your quality of life coupled with the possibility (or probability??) that you have endometriosis… my concern with not having surgery is that the longer it grows, the greater the odds that it may cause further/future pain and/or possibly affect your fertility. Please understand that I don’t mean to sound preachy at all. I am just concerned for your well-being.

If for any reason you have intestinal involvement with endometriosis, prompt attention is important. Multiple women in my local endo support group have had emergency surgery for bowel obstructions that turned out to be endo. I don’t mean to scare you but it’s something you should be aware of since many docs are totally clueless that it can even happen. (The woman in my endo support group who had a complete blockage was told after surgery, “you have cancer”. Come to find out, the biopsy came back ENDO and NOT CANCER. Her surgeon was shocked).

As far as the rheumatologist is concerned, it troubles me that you can’t reach him. February is a long time away when you are struggling as you are! Whether not taking to that med is a factor in not being able to reach him or not, I don’t know. Sadly, too many docs are “in bed with” the pharmaceutical companies. Some are even paid spokespeople for a drug while simultaneously prescribing it! (Personally, I think that’s unethical). The link below is a very helpful tool that can be used to look for conflicts of interests doctors may have. You just plug in the info it asks for. If your rheumatologist receives any compensation from the makers of the drug that didn’t work out for you, I’d look at it as a red flag.

Dollars for Docs

Regardless of all that, there’s no reason you shouldn’t be able to reach your own doctor until February! Sadly, chronically ill patients are often put in a position of needing to advocate for themselves (sometimes aggressively!) to get the care they need. Did you ask to speak to his nurse? If that doesn’t work, you could try asking to speak to his office manager.

If all else fails, you could say something like, “I need to speak with my doctor and it cannot wait until February. I have tried talking with the doctor’s nurse and the office manager, to no avail. I am in lots of pain and I’m also worried about losing my job. Can you please help me? I could really use some help. I’m spinning my wheels.”

Was the rheumatologist the doctor who authorized just 6 days? Like Endochick was saying, 12 weeks unpaid leave is federal law. I don’t understand how/why your doctor authorized just 6 days but if you’re talking about FMLA, you are entitled to 12 weeks unpaid leave. You mentioned “unum”. I’m not familiar with that term.

I am concerned about the trouble you’re having getting the time off from work that you need and I’m worried about your pain level. I would encourage you to get a second opinion and to advocate for yourself with the medical offices. I know it’s hard but it doesn’t sound like things are likely to get better without you taking some sort of action to get things moving. If you have loved ones who can help you make the calls, all the better. I realize that with privacy laws they may end up handing the phone to you at some point – but sometimes having a loved one call or tag along to an office visit gets the attention of the powers that be. It’s sad but true that patients sometimes have to resort to this but I know there have been times I’ve had to! You should see the difference it can make to bring my husband to an office visit!!

My thoughts will be with you. Good luck and please keep in touch!

Jeanne

23 JeanneNo Gravatar { 12.19.12 at 3:41 am }

Katie:

P. S.

I just posted a request to my Facebook friends to stop by here and post any comments that might be helpful for you. I hope it helps.

Jeanne

24 KatieNo Gravatar { 12.19.12 at 12:58 pm }

Yes, I have not been formally diagnosed with Endo. My old doctor suspected it, but did nothing in terms of proving it one way or another. I stopped going to my old doctor mainly because of 9 years of complaining of pain and her telling me it was all in my head. After one visit to my new doctor, I was referred to the rheumatologist. Not because of my symptoms, though, but because my RF was extremely high. I do not know the means to which she deduced Endo. I really do need to get to an OB/GYN. It’s just hard for me. It probably sounds childish, but I get anxiety when I have to talk to someone I don’t know in person or over the phone. Doesn’t happen to me when I can type instead of talk. Even at my job, when I have to talk to a dealer or a customer, I prefer to email than to call them. I need to get over it. It just takes me awhile.
Unum is the FMLA/Short-Term Disability insurance that my company has. And the law is you can have UP TO 12 weeks per illness per calendar year, but to be approved for FMLA, your doctor has to send in a certification to show them that you are truly sick, and on that certification, they are asked how long you can be expected to be out of work. Like, for example, if you were getting surgery done, and the doctor said you only needed 4 weeks to recover, that doctor would tell FMLA that you will be out of work for 4 weeks, not the entire 12 weeks that you can be allowed. I’m still trying to get in touch with my rheumatologist to see if he can send in a new certification with increased days, at least until we find the right combination of meds for me. I don’t think he is in bed with the drug company. This is not the first med we tried. At first we just tried increasing my anti-depressant and adding tramadol. He also had urged me to see a sleep doctor as poor sleep habits can make Fibro worse. Found out I have mild sleep apnea and insomnia. I stopped using the CPAP because it made my throat sore, but the sleep doctor says if I can lost just 15 pounds the sleep apnea would probably go away. My sleep apnea was very mild. And I’m pretty heavy thanks to being less active because of the pain. I’m trying to lose the weight. I’ve been walking more, and making healthier food choices. It’s been slow, but I’m starting to lose some weight.
I’m also trying to get accomodation approved at my work to allow me to work from home on my bad days. Because even though with FMLA I would keep my job, I cannot afford to not have a full paycheck. Only problem is, they want more info from my rheumatologist. So, we will see how that goes.
As for the IBS, I will keep a close eye on it. IBS is common with Fibromyalgia too. In the past month, there have been two times that I noticed red/pink flakes in my stool. It wasn’t blood, it didn’t color the toilet water, and it held it’s shape. My thought the first time it happened was red peppers or tomato skins. But I don’t eat red pepper, and the only tomato products I use do not include the skin. So after the second time, I tried researching it. Most of the things that came up were about blood. But in one hit, a doctor listed off possible causes. He mentioned hemorrhoids, infection, colitis, or diverticulitis among other things. Another hit also mentioned endometriosis along with the others. Both times, the stool was normal consistancy and color, just with these soft flakes mixed in, as well as some floating in the water. If it happens again, I’m going to get a sample to take to the doctor.
I really hate talking about things like this. I guess reaction to going so long with a doctor that never took me seriously. It got to the point where I would only go in to the doctor if I had an infection that wouldn’t go away, and for my annual check up. The last few things I had told my old doctor, her exact words her, “Hmm. I don’t know. Let’s hope it goes away on its own.” She even said that to a rash that didn’t respond to steroids or creams. They even treated it as scabies, even though it definitely wasn’t scabies. Nothing worked on it. It was like, even though it was something she could physically see (unlike some of my other problems), because it didn’t respond to anything, it must not be anything.
I absolutely dread going to the doctor. And even when I switched doctors, I didn’t even hit them with everything because I didn’t want to sound like a hypochondriac. There are still things I haven’t brought up to them. I hate it. I need to get the proper help, but I’m scared of being labeled as a hypochondriac. I really don’t know what to do.

25 JeanneNo Gravatar { 12.19.12 at 2:05 pm }

Katie:

I’m pressed for time at the moment but I will reply later (ASAP). I just figured I’d post your comment now in case anyone else has feedback for you. Talk with you soon!

Jeanne

26 JeanneNo Gravatar { 12.21.12 at 10:27 am }

Katie:

I’m sorry it took me a couple of days to reply. I wanted to give your comment the time/attention it deserves.

I’m really sorry your former doctor told you things were ‘in your head’. Sadly, this nonsense is VERY common. It saddens me that so many doctors do this. I’m glad you switched out. That type of thing is always a red flag to me that it’s time to find a new doctor. Who wants a doctor who doesn’t take symptoms seriously or who thinks they are psychosomatic in nature when they are not? Not me. I’m really sorry.

As far as having anxiety over the issues you described, I don’t think it’s childish at all. Some people truly find this difficult and it sounds like the anxiety is a real barrier for you. Please don’t beat yourself up about it. At the same time, if the anxiety is keeping you from seeking the medical treatment you need, it might help to consult with a counselor/therapist. I have a therapist who specializes in gynecological conditions (among other things). She is extremely helpful. There should be no stigma in getting such expertise if it will help you do what you need to do to get the treatment you need. (Please ignore any societal stigma that might make this option sound negative in any way). Some people really dislike the phone… for whatever reason. In today’s environment, many doctors are incorporating options for email communications and such. So, perhaps you can take advantage of that as well. However, getting input from a therapist might be more helpful in the long-term.

I really hope you can reach the rheumatologist and get what you need.

I have sleep apnea and I know all about the joys of CPAP! Fibromyalgia and sleep disorders appear to be commonly co-existing conditions. Do you have a CPAP machine that has a built-in humidifier? That might be helpful for your throat. If you don’t, you might be able to swap models at your CPAP provider. Also, the tubing from the machine may be off-gassing chemicals from the plastic if it’s relatively new. I had to air my tubing out for awhile before I could use it. I have multiple chemical sensitivity. I was having various problems (including wicked migraines) and had to take a break from the CPAP machine (for airing out) to pinpoint what was what. (I also had to swap out my headgear… but that’s a long story!) So, I understand how interesting the CPAP journey can be.

It would be great to be able to work from home! I really hope you can reach the rheumatologist soon.

I too have IBS. Have you ever had a colonoscopy? Again, I could talk at length about my experiences with intestinal issues. Keep pushing for answers from your docs. As far as the doc who said, “Hmm. I don’t know. Let’s hope it goes away on its own”, BIG SIGH. Comments like that are always red flags for me too. It’s great when docs can admit what they don’t know but it’s NOT great when docs wish upon a star that things will self-correct like that!

I once had a rash that the dermatologist thought was scabies. I was scared to death to use the cream to treat it as that – but I reluctantly did it. It was NOT scabies. I was NOT thrilled to have used that stuff – especially since I have multiple chemical sensitivity (i.e. it likely did more harm than good)!

Do you have skin allergies? I have learned the hard way that I have many. Have you ever been patch tested by a dermatologist? Do you use cleaning products, detergents, soaps, cosmetics, etc. that are safer than the mainstream products most people use? Again, we could probably discuss this at length and I might be able to help you narrow down what might be causing a reaction. Was the rash a one time thing? Or no?

Who can blame you for dreading going to the doctor? No one wants to be viewed/treated as a hypochondriac. Sadly, many patients with valid concerns are treated that way and it’s shameful! I know switching doctors is a royal pain but I promise you that if you can find the right combination of doctors for your conditions/symptoms, you are likely going to feel better than you do now.

No one should ever have to be afraid to talk openly and honestly with his/her doctor(s). However, you are NOT alone in feeling that way! I’ve been there and done that. It took me years but I now have a team of docs that I can say anything to. I can’t tell you how liberating that is! It’s worth the effort. It really is. The more candid one can be with a doctor, the more that doctor can help.

I know it’s scary and exhausting but it sounds to me like you may have reached a stage where it’s time to look for new doctors. What you have now just isn’t working for you. i know taking time off work to see new docs is really hard. However, in the long-run it will pay off if new docs can help you (in ways that you’re just not getting helped sufficiently now).

Is there anyone in your geographical area who has similar symptoms who you might be able to talk to? Maybe they could suggest a doc they really like? My concern is that you seem to be stuck, spinning your wheels, now. I know finding new docs is not fun or easy. All I can say is that investing the time has paid off for me and other patients I know. Perhaps it can help you too.

I’d keep the pressure on the rheumatologist’s office in the meantime. Write them a letter requesting what you need if that’s easier than calling them. Perhaps it will even catch their eye more and get their attention.

Please keep in touch. Best of luck and I hope to hear from you soon.

Jeanne

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