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Fibromyalgia Flattened

Have you ever felt like you were flattened by a steamroller? Well, other than a few brief appearances here and there on Facebook, I haven’t been online much. The fibromyalgia flare-up that began several weeks back escalated within the last couple of weeks. There have been times where I have felt like I was just flattened by fibromyalgia. Getting out of bed in the morning has been a Herculean feat. The stiffness and pain have been really intense in the morning. Some days it has been difficult to walk from room to room. Every day, I have had severe head to toe pain.

On days like today when it rains, I dread the idea of needing to go outside. Rainy days aren’t just a problem if I venture outside. I don’t have to go or look outside to know it’s rainy. I can feel it no matter where I am. Sometimes, I feel like a human weather vane. I know the air will hurt my skin stepping out into a rainy day. My body feels like one big bruise. Everything really hurts.

I love fall. I always have. Fibromyalgia will not steal my love of fall from me. At the same time, as I wrote last year in Fibro Fall, I am fully aware that the change of seasons from summer to fall wreaks havoc on my body. It is what it is. I can’t control the weather.

On Saturday, I had my regular acupuncture appointment. When I have an appointment, I inform my acupuncturist about which symptoms have been bothering me since my last appointment. Needless to say, I filled him in on the fact that my fibromyalgia pain has been flaring-up badly. I was so happy that my acupuncture appointment was on Saturday. I love acupuncture so much!

In addition to this fibromyalgia flare-up, I have been dealing with an interstitial cystitis (IC) flare-up. (I am thankful that I have the ability to do bladder instillations at home). As is so often the case when my IC flares up, my irritable bowel syndrome (IBS) has been flaring up too. Somewhere in there I had a period that was more challenging than most. The cyclical rectal bleeding that prompted colonoscopy number four in April 2009, which I wrote about previously here (Colonoscopy Results With Pictures) was worse than usual. (If you have cyclical rectal bleeding and your doctors tell you it is unrelated to endometriosis, just know that there are other patients who have this. See your doctor if you have this symptom). In my case, the bleeding happens every month and generally precedes my period by two days.

In addition, my head was killing me during my period (as happens with every period now, to one degree or another). So, I haven’t been up to writing lately. Throw in a few mild multiple chemical sensitivity (MCS) reactions for having the audacity to leave the house for good measure and it has been challenging the last couple of weeks.

Anyhow, my fibromyalgia is still flaring but I am doing better than a few days ago. This is quite possibly related to the fact that I had acupuncture on Saturday. Having talked with many online friends who have fibromyalgia, I know that I am not alone in having a flare-up now. My thoughts go out to fellow patients who are dealing with increased pain at this time. I have been feeling flattened by fibromyalgia. If only the fibromyalgia itself could be flattened instead of the other way around.

On a random side note, I would like to thank my Facebook friends for supporting this blog on NetworkedBlogs and helping it to be ranked in first place there for endometriosis blogs. Interested in following this blog on NetworkedBlogs on Facebook? Just click here: here. Thank you.


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


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29 comments

1 AmandaNo Gravatar { 09.28.10 at 4:06 am }

I am so sorry that the changes in weather affect you like this… the change in weather affects me by causing headaches and light-headedness, but was actually worse mid-summer when the air pressure kept changing so suddenly. It seems each season has its challenges in one way or another: spring and summer bring difficulties for people with hayfever, autumn and winter bring difficulties for people who feel the cold more (for example)… I know my hands will ache and feel like they should fall off in another couple of months time if I so much as go out the house without adequate gloves! But I digress… just wanted to stop by and saying I am thinking of you, despite my inability of late to keep up with blog posts and facebook updates etc xx
.-= Amanda´s last blog ..Clouded Thoughts or how the upcoming wedding- our plans to try to conceive- and financial concerns have made my mind a mess! =-.

2 Matthew SmithNo Gravatar { 09.28.10 at 11:21 am }

I do love the autumn myself. I live on the edge of London and a few years ago, before my work ran out, I had the pleasure of driving a truck through the North Downs (a range of hills south of London) and seeing the glorious riot of greens, browns and reds as the leaves got ready to come down off the different levels of trees. It was an amazing sight.

I’m sorry to hear about your fibro flaring. The other night there was a programme on British TV called Saints and Scroungers, which contrasted people who care for those with disabilities for nothing with those who cheat the benefit system, which showed a young girl who had to care for her mother, who has osteo-arthritis and fibro, and how she eventually managed to get the advice she needed to get an allowance, so she could hire a carer and her daughter could go back to living like a little girl should.

If you’re in the UK (but not elsewhere, unfortunately, unless someone posts it illegally to YouTube), you can view it here*.

[*Editor's Note: As I am unable to view the link provided by Matthew, I know a large proportion of my readers wouldn't be able to either. I've removed the link from this comment because I felt it would be inappropriate to post. Also, I generally don't make it a habit of posting blog comments that contain hyperlinks].

They mentioned the charity DIAL UK in the programme, a voluntary group which gives advice on such things as filling out benefit forms; another viewer suggested the Disability Advice Service (you can Google both of these; note that DIAL’s website is poorly scripted and, certainly on Google Chrome which is what I use, has text cut off at the top).

3 SaraNo Gravatar { 09.28.10 at 2:05 pm }

Jeanne,

I am glad that the acupuncture seems to have helped somewhat. I have a friend who has Fibromyalgia and she struggles with it. I didn’t know about endometriosis and rectal bleeding. I imagine that can be really scary, not to mention having the colonoscopy. I’m due for my regular one this year…not too fond of this procedure.

I hope you feel better soon so that you can enjoy the Fall season. Also congratulations about Networked Blogs. That’s quite an honor and it’s also nice that your friends showed their support:~)
.-= Sara´s last blog ..Story Photo- What Happened =-.

4 KatieNo Gravatar { 09.28.10 at 6:35 pm }

Just been reading your posts lately. I as well have cyclical rectal bleeding. Just had lapro done for the second time for endo. This time around however, only a tiny little spot was there, not even big enough for removal. So now I have the joy of recovering from surgery, and still have the horrible awful bleeding and pain.

Doctor suggested Adenomyosis. Which the only cure for it is Hysterectomy. Have you read or heard anything about this? This is suppose to be Endo’s silent and nastier sister.
.-= Katie´s last blog ..OMFG am I bleeding to death! =-.

5 KatieNo Gravatar { 09.28.10 at 6:36 pm }

Also I forgot, my mom has Fibromalygia and I have been diagnosed and tested for IC. ;-) Your post made 100% complete sense to me from myself as well as my family.
.-= Katie´s last blog ..OMFG am I bleeding to death! =-.

6 JeanneNo Gravatar { 09.28.10 at 7:31 pm }

Matthew,

Yes, fall foliage really is pretty.

Hopefully, the flare-up will calm down soon. The year-round pain is bad enough. The exacerbation of symptoms at times like this is very painful and exhausting.

Jeanne

7 JeanneNo Gravatar { 09.28.10 at 8:10 pm }

Sara,

Yes, I am extremely grateful for the fact that so many of my symptoms respond very well to acupuncture. I just love acupuncture so much!! I’m sorry your friend struggles with fibromyalgia. :( It can be so very painful. I’m glad she has you for a friend for support… which is so needed when one has chronic pain.

What’s interesting with the endometriosis and the rectal bleeding is that unless a patient has endometriosis invading the bowel wall, doctors generally tend to dismiss it as “something other than endometriosis”. However, I have met several women (both in local/in-person endometriosis support groups and online) who have endometriosis, have cyclical rectal bleeding, and do not have endometriosis that has invaded the intestinal wall.

Sadly, most gastroenterologists I have encountered (or that women I know have encountered) seem to know little about endometriosis. When endo does invade the intestinal wall, most often it is a general surgeon (or possibly a colorectal surgeon) who performs a bowel resection surgery. Meanwhile, women being treated for endometriosis might be seeing anyone from a gynecologist to a pelvic pain specialist to a reproductive endocrinologist (that’s just a sampling) to get their endo treated.

There seems to be a huge disconnect between the “endometriosis specialists” and the general surgeons or gastroenterologists. So, women with endometriosis are often given the impression that the cyclical nature of their rectal bleeding is “just a coincidence”. While I had met endo patients who have this symptom in the “offline” world, it was really once I began to “meet” women from around the world online that I began to fully comprehend how many other women out there are dealing with this symptom. In my opinion, there is some room for improvement in how the medical profession handles the question of whether endometriosis and rectal bleeding are connected for patients whose endo does not invade the intestinal wall!

I was thankful not to have my “theory” dismissed out of hand when I had my most recent colonoscopy (in April 2009).

Best of luck with your upcoming colonoscopy. I have had 4 of them (plus I had a foot of my colon removed in 1996 following a partial intestinal blockage) and I have to say that the preps get better as the years go by. For me, the prep is typically the worst part. If you read my post, My Gastroenterologist Is A Genius, you can read a bit about my most recent prep. It was an improvement.

Thanks. I hope I feel better soon too. If this year is anything like the last few years, the “fibromyalgia monster” won’t be letting up anytime soon but I will do what I have to do to maximize my enjoyment of the fall foliage. (This past weekend after acupuncture, for example, we got an early peek at some leaves that are already turning. Hubby drove the car while I reclined the seat and took in what I could – as sitting upright just wasn’t doable).

Thank you. I have some very supportive friends. :)

Jeanne

8 JeanneNo Gravatar { 09.28.10 at 9:52 pm }

Welcome Katie!

I am sorry to hear that you too have cyclical rectal bleeding. It has been awhile since I mentioned this particular symptom in a post. I was recently talking with one of my friends who has endometriosis about the fact that I know of several women who have endo and have this symptom. Yet I know of no one who has had her doctor say, “yes, it’s definitely connected”. I actually purposely included that symptom in this post figuring that someone out there might search online and find this post. (I want people who think they are alone to know that they are not). I am curious as to whether that symptom might have helped you find my blog?

In any event, I’m sorry that you are currently managing surgery recovery, bleeding, and pain. :( I’m confused as to why they did not remove the endometriosis that they found this time. I know you said that it was a small amount. I just don’t understand why they left it behind.

In regard to your question about adenomyosis, yes… I have definitely heard of it. Before I proceed, let me refer you to my blog’s disclaimer.

The first time I heard of adenomyosis was in 1996. I have had 7 surgeries (6 laparoscopies and 1 laparotomy). In the 1996 laparotomy (major surgery with 5 days in the hospital/more than just endo addressed), one of the two doctors operating on me (long story as to why there were two) told me that I have “probable adenomyosis”.

As he explained it to me at the time, the only definitive way to diagnose adenomyosis would be to examine uterine tissue using a microscope after removal of the uterus (hysterectomy).

According to the Mayo Clinic site (see below) and consistent with what my doctor told me then, this is the only definitive way to diagnose adenomyosis:

adenomyosis

In my travels online, I am hearing more and more about adenomyosis. Online, I have heard of women (who had not had a hysterectomy) who were told they have adenomyosis. This confused me in light of what I had been told.

When I first started hearing so much about it, I wondered if perhaps the information I had been given was outdated. In other words, I wondered if that was the only way to definitively diagnose it back in 1996… but if that had somehow changed since.

However, with the Mayo Clinic site currently saying the same thing my (former, retired, wonderful) doctor told me in 1996… I am unsure of why there is such an upsurge in women being diagnosed with adenomyosis (without having had a hysterectomy to provide that definitive diagnosis).

Did they by any chance say that you have probable adenomyosis, as my doctor had told me? (I was told that I have a “large, boggy uterus”) and I have a long (and sometimes downright scary) history with bleeding issues… including once having a period every day for over a year and becoming anemic).

Homeopathy has helped me a great deal in regard to bleeding issues.

In regard to your hysterectomy question, there is a site that provides information and education about hysterectomies that lists adenomyosis:

HERS Foundation

The above site was first brought to my attention by an endometriosis support group member locally. Perhaps they can provide you with information that might be helpful.

While there is an overlap in the endometriosis patient population and the adenomyosis patient population, endometriosis and adenomyosis are two distinct conditions.

I hope that you get some relief from your pain soon. There are many “alternative medicine” options that nicely complement or assist the Traditional Western Medicine (i.e. “drugs and surgery”) that are so common.

I attended endometriosis support groups on a monthly basis from 1992 – 2008. The 2001 – 2008 portion was after getting married and moving. I started up an endo support group from scratch and we continued to meet monthly until 2008, when I stopped scheduling meetings. Women were either too sick to make it to meetings, they had work or other commitments on meeting night, or their needs were being met online. (I wrote a long post about the difficult decision to stop having monthly meetings).

In any event, the information I gained in all of those years of talking with other endo patients was priceless. Some of the methods other women had tried, I then tried. Some, I didn’t. I took a look at the amount of money I had available and made the best choices I could on what to try.

Everyone is different and what works for one person doesn’t work as well for another. For me personally, acupuncture has definitely been the most helpful thing that I hadn’t tried before. I’ve now been doing it for almost 10 years. Homeopathy has been very helpful for me too.

Some of these I’ve tried and others have been tried by endo patients I know:

Chiropractic (not all chiropractors are the same… some are especially knowledgeable about pelvic issues), massage therapy, Chi Nei Tsang, various dietary changes and/or nutritional supplements, physical therapy for pelvic pain (there are PTs specially trained in pelvic issues), etc. This is not an all-inclusive list. However, it might give you some ideas for getting some relief… of pain and other symptoms.

Regarding your second comment, I’m sorry to hear that your mother has fibromyalgia. As far as IC is concerned, I had 4 cystoscopies before I was finally properly diagnosed. Three urologists told me “no”… before my pelvic pain specialist did a 4th cystoscopy and said, “definitely yes” for interstitial cystitis. Once I finally got an accurate diagnosis, I was (finally) able to get dramatic improvement in my pain from a combination of bladder instillations and oral medication. I may still get occasional flare-ups (like now). However, the improvement from where I was at before is immense. (I have written posts about this too).

I am sorry you are struggling so much! I took a peek at your blog prior to replying to your comments and I can see that you are going through a difficult time. :(

If it helps at all to know that there are many people who are struggling with similar symptoms and finding the most effective ways to manage their own symptoms, just know that you are not alone. There are many other people who are on similar journeys. Sometimes, it can help a great deal to connect with fellow patients for information and support.

Take care,

Jeanne

9 KatieNo Gravatar { 09.29.10 at 12:14 pm }

WOW thank you so much for the amazing response!!!!

I am trying accupuncture tomorrow and I am super excited!!!

Diet has been the best helper I have found with all my issues. I recently cut out red meat after this last surgery and have noticed less “burning” pain with my rectal area which is nice. I am slowly regaining my life which I slowly lost prior to surgery.

As you know, after surgery nothing but female pads, and let’s just say its a little mentally though to deal with. I literially feel like I am bleeding to death….

Today is 2 weeks I quit smoking. I also have noticed very positive things from this, and I am hoping it helps to reduce the inflammation.

I dont have an support groups around here, and I really would like to start one with one of the leading doctors living in my home town for Endo. Maybe possiblely starting a “Pelvic Pain” Support group? I would love to start something like this at the local medical clinic or hosptial but dont know where to start. Would a pelvic pain support group work? Than it would group in so many sufferers and bring us together. Would LOVE to.

10 JeanneNo Gravatar { 09.29.10 at 9:25 pm }

Katie,

I hope you find acupuncture helpful. That’s great that dietary changes have helped you feel better. It’s great that you quit smoking. I’m not sure what to tell you in regard to an in-person support group. In this day and age, it’s very difficult to keep local support groups active, primarily due to turnout issues. More and more people are turning to the Internet for support.

Jeanne

11 Jannie FunsterNo Gravatar { 09.29.10 at 9:32 pm }

If I sang you a song
waved my magic wand
and make your pain go
I would, you know!

So hear me humming
and my guitar strumming
for a pain-free Jeanne
breathing air that is clean.

xoxo
.-= Jannie Funster´s last blog ..The Blog Marm — a poem =-.

12 JeanneNo Gravatar { 09.30.10 at 12:11 am }

Jannie,

Please sing me a nice song
Your words are never wrong
Bright just like the sun
They really mean a ton

I can’t wait for your CD
Out just soon as can be
Please no more ticketed hills
Just some singing of the bills

I’m looking forward to your next CD release, Jannie Funster!

Jeanne
xoxo

P.S. When do you plan to sing a song about the petition, my dear? ;)

13 Jannie FunsterNo Gravatar { 10.06.10 at 10:05 pm }

Luckily the ticket was reduced
Not a whole $220 as to be, it used
But a mere $One ninety-seven
And in TWO payments — heaven!

Today did not have such heaven in store
Paint fumes and cig. smoke made my head sore
but feeling better now
I shall add “And how!”

Speaking of my CD two you have not yet heards
what do you think of so far, my lyric words…

(I believe I sang you a bit of the melody one day…)

1.
do you dream in shades of green
and whirling twirling tangerine
floating in a summer sunset sky
orange holding hands with blue
to paint a starry night for you
crimson cotton candy ‘way up high.
…gold and silver in the Milky Way
rainbows dancing at the break of day.

Do you dream the dream I do
A sweet dream for me and you
Do you dream the dream I do?

2.
do you dream of you and me
growing grapes and apple trees,
peas ‘n beans ‘n yummy corn, ‘n such
watering deep when days are dry
pulling weeds as the years go by
fertilizing everything with love
…deep in winter when the snow flies
baking apples into cakes and pies

Do you dream the dream I do
A sweet dream for me and you
Do you dream the dream I do?

3.
Do you dream of everyone
every soul beneath the sun
hanging out in peace and harmony
bla, bla, bla to be continued…

Oh yeah — the petition song, it’s on my list!

xoxo
.-= Jannie Funster´s last blog ..10 Major Blog Improvements I’m Working On or at least thinking about =-.

14 JeanneNo Gravatar { 10.06.10 at 10:21 pm }

Jannie,

So sorry that you received a ticket
Glad to hear that you did lick it (well… sort of, anyway)
I am glad you got the fee knocked right down
So you can turn that frown upside down :)

Now, onto the store you went to today… Paint fumes AND cigarettes? Oh my. I would NOT fare well there! I’m sorry that you got a headache from the double whammy of fumes. :( Is this a store you can avoid in the future? That would keep me away.

On a brighter note… Jannie, I love the lyrics and I always love ANY opportunity to hear your beautiful voice. I cannot wait until your second CD comes out. Thank you so much for providing sneak previews like this!

As far as the song to promote the endometriosis awareness petition, I cannot WAIT to blog the heck out of it and then get it into every corner of social media we can find! (Yes, dear readers… you heard it here first! Jannie is going to SING to get the word out about our endometriosis awareness petition. How cool is THAT?!)

You rock, Jannie! Literally AND figuratively!!! ;)

Jeanne

15 Jannie FunsterNo Gravatar { 10.09.10 at 12:52 pm }

tWas at my hubby’s shop
I did flop
cars you know
and a smoker in his own world you know

apparently he had smoked 2hours before.
But his poisin lingered on to make my head sore.

I also have a neck rash.
And need to buy bags for trash.
But life could be worse
I have $5 in my purse.

As to the Endo song
will I sing soon, must you wait long.
Only the Milky Way knows for sure.
And one day perhaps a real cure.

Now I am going to eat a burger.
Then practice guitar, like a good song worker

blue Bunny is out chopping your wood.
And stacking it neatly like he said he would.
He’s probably hungry for a big old can
of tasty-fresh wonderful, funderful spam.

Xoxo
.-= Jannie Funster´s last blog ..The Spammer — a poem =-.

16 JeanneNo Gravatar { 10.14.10 at 1:43 am }

Jannie,

I haven’t blogged in 17 days. This is a new record… and not one that I am happy about one bit! You posted this comment on 10/9 and here I am publishing it on 10/14. How sad is that? Have I ever been this behind? I think not.

Anyway, I understand this may be a stretch – but if it’s hubby’s shop, couldn’t he implement a no-smoking policy so his own wife can enter the shop without becoming ill? Not to mention that it’s not healthy for him to be exposed to secondhand (or thirdhand, as the case may be) smoke that isn’t healthy for your hubby either? I assume you mentioned cars because of either exhaust fumes or stuff in the air from cars being worked on? I’m so sorry your head was sore.

Did you make a dash for the bags for trash and did you treat that rash?

Yes, it could be worse. You have $5 in your purse (which beats zero).

Oh, the endo song. The wait sure is long. Can I speed you up on it by sending along King Kong? ;)

Please tell the Milky Way we need the song to reach her and her and her…
Yes, one day wouldn’t it be nice to have a cure?

Jannie, I’ve got nothing to rhyme with burger. You’ve got to give me something to work with here. ;)
Though you did well with worker!

Happy to hear Blue Bunny is chopping that wood
Right now the fire is going real good
Neatly stacked is how I like it
So nice of BB to make it fit

I’ll bet he’s eating loads of Spam
Taking after the woman he calls ma’am
Your Spam Yoga was a treat
Even if Spam I do not eat

For readers wishing to see Spam Yoga
Please don’t try it in a toga
Just check out Old Miss Jannie’s blog
Her Spam post is really not a dog.

Thank you, Jannie! You always know when I really need your humor to lift me up. (Should I be concerned that you have implanted devices in my brain to read my thoughts from afar? How else can we account for your perfect timing?)

Jeanne
xoxo

17 Putting Out Fires And Coming Up Roses — ChronicHealing.com { 10.14.10 at 6:59 pm }

[...] flare-ups of various conditions that I mentioned previously are ongoing. So, things are just challenging at the moment but I will try to get back into the [...]

18 AnnieNo Gravatar { 10.16.10 at 9:06 pm }

Oh dear! I’m sorry you’ve been suffering so much lately!
When you commented on my blog, I realized I hadn’t seen any posts from you lately. I thought I’d added you to my reader awhile ago, but it didn’t work for some reason. I’ve fixed it now and am catching up on your blog. Now that fall has flattened you for awhile, I hope that the worst it over and that you’ll have it much easier for the rest of the season!

19 JeanneNo Gravatar { 10.16.10 at 9:54 pm }

Annie,

Yes, it has been interesting the last few months. That’s for sure! I am grateful that the last couple of days has finally given me some let up on the fibromyalgia pain. I still hurt from head to toe – to be sure – but it is not as bad as it has been for about 3 months now. My interstitial cystitis flare-up seemed to really peak last Sunday. The pain was so bad that I got scared that maybe something else was going on. (I have had 11 kidney stones in the past. I started to worry about more stones). Anyway, the IC is still definitely worse than “usual” but it’s better than a week ago for sure. So, I’ll take it. I have had some other major issues going on health-wise in the last few days but I won’t bore you with the “list”.

I’m sorry your reader wasn’t working right. I don’t know if you use RSS feeds but, if you wish, you can subscribe to the RSS feed for my blog if that helps. Yes, I hope that maybe I will catch a break now that my symptoms have calmed down a bit because it would be nice to have a breather before I get walloped with the fibromyalgia pain that is a given with the winter/cold months. I’m crossing my fingers.

Thank you, Annie. ;) I’m sending positive energy your way!

Jeanne

20 AliNo Gravatar { 10.21.10 at 6:37 pm }

Hi Jeanne!

I ran across your blog today. I am also a chronic pain blogger – just started this year. I had a hysterectomy almost 6 years ago. I have endometriosis. I was also diagnosed with adenomyosis – endometrial tissue in the muscle lining of the uterus – at the time my uterus was removed… after that i found out that I had IC – I now have two Interstim implants in my low back to help with that. I also have chronic pericarditis and joint pain … so I felt a lot of what you talk about with weather affecting your pain. There are days my hands and feet feet broken. The docs are still trying to piece it all together… anyways, I love your possitive outlook even in pain – which is my desire and I want to be an encouragment to others out there in pain to know that there can be a different kind of happiness even while we are suffering. So many people just complain and don’t try to make the most of the life we have been given … would love it if you want to check out my blog and give me any feedback!
God bless!
ali

21 KatieNo Gravatar { 10.22.10 at 1:14 pm }

Ali-
I am interested in your symptoms and what lead to the hysterectomy. I as well have been diganosed with IC, and was treated for & had surgery for endo when I was 19. Doctor just went back in swearing up and down that I had bowel endo, and that I needed part of my bowel removed. After surgery, he discoered I had a TINY spot of endo, but nothing to remove. After taking pictures he know thinks I have adenomyosis and wants to perform a hysterectomy on me… Problem is I am 31 and haven’t planned for kids yet.. But we both want kids. I am stuck in a place of pain & trying to function, with no hope of healing except if I have hyster… I am scared that i will remove my uterus and it will solve nothing. This last surgery made me completely gunshy.

I would love to coorspond with you and discuss your symptoms, process ect you went through. I have no joint pain, but my IC flares any given day, and my lower half is constantly flaring up and down… Doctor believes it is because my uterus is inflammed, hence causing all the other organs in the area to be inflammed… I am just so lost and dont know where to go from here.. I am sick of the pain, but I also would like to have kids & I am scared that if I have hystrect. it wont solve anything..

Thanks,
Katie

22 JeanneNo Gravatar { 10.22.10 at 2:01 pm }

Welcome Ali!

It sounds like you have been through a great deal. I am very sorry for your pain! When I had one of my surgeries for endometriosis (a laparotomy/major surgery), my doctor told me that I have a “large, boggy uterus” and “probable adenomyosis“.

As you and I have discussed offline, there is no cure for endometriosis… including hysterectomy. I wish there were a way that doctors could diagnose adenomyosis without having to dissect the muscle wall lining of the uterus… since removal of the uterus to do such a dissection is the only definitive means for diagnosing adenomyosis.

After 12 years of firing and hiring doctors, I finally got diagnosed with interstitial cystitis in 2004. Thankfully, my pelvic pain specialist (the one who did my 4th cystoscopy) has found a treatment regimen that has greatly improved my IC symptoms. Hopefully the implants are helping with your IC.

I’m sorry about your joint pain. You mentioned on your blog having a rheumatologist. I’m guessing that you have been tested for various autoimmune conditions in light of the diagnoses you already have? I hope your doctors can piece things together and get you some pain relief!

Yes, I think that having a positive attitude really can change how one experiences adversity and manages challenges. I think having a “pity party” mentality can make matters much worse. We all have our rough moments but I do believe that finding ways of focusing on things that are positive helps.

Take care,

Jeanne

23 JeanneNo Gravatar { 10.22.10 at 2:49 pm }

Katie,

I am still confused as to what happened with your last surgery. You had indicated previously that no endometriosis was removed in your last surgery due to the quantity of endo found. I am still unclear as to why they did not remove what they did find, regardless of its size? Was it located in a place that is difficult to operate on? I am sorry that your doctor had you thinking that you would need part of your bowel removed when that wasn’t the case at all. (Having had a foot of my colon removed in 1996 due to non-endometriosis issues, I know what such surgery entails). What made your doctor predict removing part of your bowel? Are you aware that many women who have endo have all sorts of intestinal issues but do not have endometriosis that invades the bowel wall?

You mentioned that your doctor thinks you have adenomyosis based on pictures that were taken. Are you aware that adenomyosis is definitively diagnosed by dissecting the muscle wall of the uterus? (See link below for more info from the Mayo Clinic):

Mayo Clinic on diagnosing adenomyosis

I certainly understand your anxiety about having a hysterectomy. Regardless of your family planning concerns, which are of course well worth consideration, a hysterectomy (as you rightly pointed out) will not guarantee that you’ll necessarily feel any better. While some women do achieve symptom relief from hysterectomy, others have the opposite happen. I would suggest getting a second opinion (or more). Many doctors in the United States are quick to jump into performing hysterectomies. (See link below for information about how hysterectomies are over-performed in the U.S.):

Newsweek article about hysterectomies

As far as there being “no hope of healing” aside from having a hysterectomy, there are numerous alternative medicine modalities. It took me many years to fully comprehend that integrative medicine has worked best for me. By taking the best of alternative medicine and combining it with the best of Traditional Western Medicine, I have gotten symptom relief far more effective than from one or the other.

Here are some ideas for things you might not have tried:

Acupuncture
Homeopathy
Jin Shin Jyutsu
Chi Nei Tsang
Physical therapy for pelvic pain
Chiropractic
Massage Therapy
Maya abdominal massage
Dietary changes
Music (this is actually one of my biggest tools for healing)

I am sorry for your IC pain. I currently have an IC flare-up winding down and it was an unpleasant reminder of how bad my IC pain used to get, years ago. It makes it hard to think. I was having serious trouble concentrating because the IC pain was so overwhelming.

After my IC symptoms began full-bore and before I was diagnosed with it, I had gotten physical therapy for pelvic pain. I was pleasantly surprised that it helped my IC symptoms. (This was before I was on any treatment for IC, since it wasn’t diagnosed yet). Dietary changes and acupuncture might help with inflammation.

I’m sorry you’re feeling so lost. Being in such severe pain can make it hard to sort things out.

The way I look at it is that it can’t hurt to get another opinion before making a decision as serious (and permanent) as whether or not to have a hysterectomy.

Best wishes,

Jeanne

24 KatieNo Gravatar { 10.22.10 at 3:10 pm }

I have to jet out out of here to go run to model & do some charity work… It’s part of my “feel good” things I do.

I have to say I am completely eyes wide open after reading your post & insanely pissed. My doctor I feel because he is a surgeon lead me down a path HE felt most comfortable with. I wasnt given the option of physcial therapy ect. prior to surgery. I also wasnt told that MRI ect and other ways there is for diganosing girlie problems (in a hurry sorry LOL)… I am completely convinced that due to the doctor being a surgeon, and prior operated on me, that he just choose that path because it was what he was familair with. I would of MUCH RATHER tried other options outside of surgery like phsycial therapy. He made it seem like my only option was surgery. I completely trusted in him, and thought I was out of options!!!!!! THANK YOU SO MUCH for opening my eyes to this… I didnt realize how many options there was to explore & after reading your post I am going to 100% go seek out a second opinion.. I never got the option of period bleeding test, or MRI or ANY Of that…. I am so enraged…. At the tune of $15,000 for my surgery, which I am responsbile for 10%, not to mention the mental pain, phsycial and trama of yet ANOTHER surgery on my body…

THANK YOU THANK YOU THANK YOU for opening my eyes…. Gotta run but I will be back!!!!

25 AliNo Gravatar { 10.22.10 at 3:15 pm }

Hi Katie -
I would definately get a second opinion because like Jeanne said – there is NO way to know if it is adenomyosis without disecting the uterous which would be after hysterectomy. I knew that going into my hysterectomy. Honestly, if I would have known that the hysterectomy wouldn’t have taken care of my pain all the way – because a lot of the pain was from my IC – I get bladder cramps that are identical to what I experienced with my uterous almost … I wouldn’t have done it. Especially if you may want to have kids I would get another doc to give you an opinion. In my case – my uterous ended up being in such bad shape with adenomyosis that it probably couldn’t have carried a baby to full term anyway – but it is just such a gamble – and endo is not just cured because you have a hysterectomy either. If you do have blowel endo etc. I would imagine that even with a hysterectomy it would be difficult for you to get relief because you will still have hormones and they will keep the endo spots producing blood etc.
and Jeanne – I do see a rhumatologist and they have been trying to piece it together but I am not classic lupus etc. so they are not sure although everyone seems to agree that I have something auto-immune going on. Last night my eye swelled up (the white part which was gross) so now I am trying to get to an eye surgeon because this could be a clue as to what is going on with my body … it’s a continual journey and I do try and keep a possitive attitude about it, but that doesn’t mean it isn’t hard!
.-= Ali´s last blog ..Am I the answer to my parents prayers =-.

26 JeanneNo Gravatar { 10.22.10 at 4:44 pm }

Katie,

Well, I probably should mention that the type of physical therapy I talked about (the type for pelvic pain) isn’t available everywhere. Hopefully it’s an option in your area, though.

I don’t know what you were talking about in reference to MRI. An MRI isn’t a standard test for endo. So, I’m not sure what you meant.

Laparoscopy is the definitive method for diagnosing endometriosis. So, if you are referring to the diagnosis of endometriosis, that is the method for diagnosis.

Physical therapy for pelvic pain is a potential option for treatment… not diagnosis. Having a laparoscopic surgery to rule endometriosis in or out is important.

Yes. It sounds, from what you’ve described, like maybe you’d just be better off getting another opinion. There are several things you have quoted your doctor as saying that don’t make sense to me. If he worded things just the way you’ve described, it sounds like a red flag to me. That’s just my opinion based on what you’ve said.

I am not clear on whether you are saying your doctor made surgery sound like the only option before your first surgery or in regard to the hysterectomy notion or what? If you are talking about having had to have surgery (laparoscopy) to get diagnosed with endometriosis in the first place, yes, that is the definitive means of diagnosis.

As far as the notion that having a hysterectomy is your “only option”… well, I already told you my personal thoughts on that. I’m a big one for second opinions (or more) for big decisions like hysterectomy.

Obviously there are exceptions to every rule. If I were under anesthesia and a doctor found cancer all over the place, I wouldn’t want him/her to sew me back up so that I could get a second opinion. I’d want the cancer taken out, of course.

A large percentage of hysterectomies are performed for very different reasons, though. In my opinion, two opinions isn’t always enough in regard to hysterectomies simply because there are so many doctors who over-perform hysterectomies. So, who you get another opinion from is sometimes just as important as getting one at all.

As far as PT for pelvic pain goes, it can help with issues that very often accompany endometriosis and IC, such as pelvic floor muscle dysfunction. I think getting a second opinion is a good idea.

I don’t know what you mean by “period bleeding test” and, again, I don’t know in what context you’re referring to MRI.

As far as the cost of your surgery is concerned, I’m really sorry to hear that. That is an awful lot of money! Did they do anything with this last surgery? I know you said they didn’t remove the endo they found. What did they do? I am always sad when I hear about surgeries where nothing seems to have been done. The good news in such cases, from what I’ve gathered over the years, is that most times when doctors don’t remove any endo, it’s better that they didn’t because they might have made matters worse if they’d tried.

I have no idea why your doctor didn’t remove the endo found but it seems odd that they’d leave it behind. Just because it was a small amount of endo doesn’t mean it shouldn’t be removed. That part baffled me. Of course, I wasn’t there and don’t know all of the circumstances (i.e. where the endo was located).

All I know is that if I were paying money like that for surgery and they left endo behind, I’d want to know why. Of course, a doctor who would leave it behind may not give you a satisfactory answer to that question. So, try not to get all fired up and go charging into the doctor’s office demanding an answer to that.

I always get a copy of my operative report. If you ask for one from the office and sign a release form for it, it should be easy to get one. It may or may not tell you much but there have been times I’ve found them helpful.

Good luck!

Jeanne

27 JeanneNo Gravatar { 10.22.10 at 5:06 pm }

Ali,

Thanks for your feedback for Katie! It sounds like we’re all on the same page in regard to the need for a second opinion in her case. I’m glad that your doctor made it clear to you before your hysterectomy that there isn’t a way to diagnose adenomyosis without doing a hysterectomy. (Informed consent is so important).

I’m really sorry to hear that you are still having such pain! :(

There is no cure for endometriosis. So, even if you did not have IC you might still have endometriosis-related pain post-hysterectomy. I know many women who do. It’s difficult to separate out what’s what since IC pain and endo pain can mimic each other in some cases. I’m just sorry that you have pain.

You are right that hormones (whether from ovaries left intact post-hysterectomy or whether from synthetic hormones taken following a surgical menopause) stimulate any misplaced endometrial tissue, regardless of whether the uterus has been removed or not.

Best of luck with the rheumatologist and getting things sorted out! When you mentioned your eye problems, I was wondering about lupus. They started testing me for lupus on 1994 when I had a tumor removed from the vaginal wall. It “wasn’t malignant” and “wasn’t benign”. I was living in a large city then and they sent the tissue sample to many special pathologists but they never were able to identify it specifically.

The gynecologist who removed it said there was “lupus-like scarring” behind it. From what I hear, ANA tests can come back negative for many years even when lupus symptoms are already present. Best of luck with your eye! Hopefully they will be able to quickly evaluate what’s happening. You’re right… you can have a fabulously positive attitude and it can also be hard! I hope your eye doesn’t hurt too much. That’s a sensitive part of the body. I’m sending positive energy your way! :)

Jeanne

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