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"Jeanne’s Endo Blog": Guest Blog – Roberta’s Twenty Plus Year Rollercoaster… Roberta’s Experiences Following Hysterectomy…

The following Guest Blog post was written by my close friend Roberta. (She’s camera shy so there won’t be a picture for this Guest Blog). I met her through my local endometriosis support group. (For that group – which I started in 2001 – Roberta was Co-Leader with me for part of the time). I have learned an enormous amount from Roberta. Her generosity with sharing her wisdom and introducing me to new modalities is unmatched. I treasure her friendship and I am honored that she agreed to write a Guest Blog post. The story below is an excellent summary of her difficult journey. There is so much more that has gone on behind-the-scenes. Roberta is one of the strongest, most thoughtful, resilient, caring people I know. I know her story will help many. Roberta has training in everything from Reiki to colon hydrotherapy to homeopathy. She works harder than anyone I know to be well. She follows rigid diets (not weight-loss diets… I mean diets for health reasons) that I do not envy. She does physical therapy exercises and Chi Nei Tsang at home. She puts into practice what she learns. She doesn’t just talk the talk. She walks the walk. Roberta is truly one of the most thoughtful people I have ever met. She uses every ounce of adversity she has been through to help others by sharing her experiences. She is one very special woman!

My 20+ year ride on a Roller Coaster – by Roberta

At the age of 30 I was a healthy, vibrant, energetic and happy young woman. I had just gotten married for the second time and looking forward to adding to “our” family. I thank God that I was blessed with a daughter from my previous marriage.

I had never experienced many problems with my period. I had at times had some discomfort but it never lasted long nor did it incapacitate me in anyway. That was soon to change. All at once my pains were so intense that I was vomiting and having diarrhea every month. The pains would last from ovulation until several days into my period. Finally after many months and doctors and multiple tests my gynecologist suggested that I have a laparoscopy. I was undiagnosed for 1 more year. The doctor who did the procedure didn’t bother to tell me that I had endometriosis.

I quickly fired that doctor and found a doctor in my area that “specialized” in endometriosis. Confirming the diagnosis he prescribed Danocrine. Unfortunately, Danocrine can only be used for short periods of time before women develop masculine side-effects. I took Danocrine for 1 year had another laparoscopy and nothing had changed. Upon stopping the Danocrine, the pains came back with a vengeance. Two weeks out of every month I was very ill. At 34 I felt I couldn’t take the pain and sickness any longer. I decided to get the complete hysterectomy-after all isn’t that the answer to endometriosis?

I felt fine, I thought. I was put on synthetic hormones immediately and just wanted to go on with my life. Within a year I was having significant muscle pains throughout my body. Additional testing diagnosed me with fibromyalgia at 36. I continued to work part time and take care of my family and home the best I could. Then at 39 my doctor decided that my blood level estrogens were too low so he prescribed a higher dose. Within 2 weeks the estrogen killed my gall bladder so I had my gall bladder removed. I didn’t realize that gall-bladder removal would be so problematic for my digestive system.

At 44 – I have now been diagnosed with leaky gut syndrome. Anything I ate caused me great distress. It took one year to get a food allergy test that concluded I was reactive to almost every type of food. I had lost 30 lbs. in 4 months and looked very ill. After a year of struggling with the leaky gut syndrome I developed chronic fatigue syndrome. The chronic fatigue produced severe, constant flu like symptoms lasting for months.

At 46 – I started the journey of severe hormone imbalance. I developed chronic pelvic pain and for three months I felt like I was delivering a baby. My doctor prescribed a very special type of physical therapy-called a pelvic pain specialist, which provided some relief. My doctor then suggested bio-identical hormones -I got much worse. Finally my husband suggested that I stop the hormones completely-I did. While I felt better initially I still was in need of something else. At just barely 48, I went to my naturopath and was prescribed a homeopathic that helped immensely. It took only 2 months time to get my chronic pelvic pain under control. Believe me when I tell you that YOUR hormones are unique to you and cannot be duplicated in a test tube.

At 52, while having my routine mammogram (something I have done for 20 yrs. after being diagnosed with fibrocystic breast disease) the doctor found a suspicious lump. I returned in a few weeks for a biopsy – I was diagnosed with breast cancer. My lumpectomy and radiation were completed by July 2008.

I feel compelled to write about endometriosis and the over use of hysterectomies in our culture. I certainly cannot say that it could be scientifically proven that my breast cancer, fibromyalgia, chronic fatigue, and leaky gut were a direct cause from the endometriosis and my choice of a complete hysterectomy. However, in my heart of hearts I know that it is so. When we introduce artificial hormones at such an early age we create a huge imbalance of our entire body since hormones reside in every cell not just our reproductive system. I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing.

I have tried to condense my story. As I looked back there were many steps and processes that I didn’t include. The last 20 years of my life has been a very complicated journey. One thing that I try to emphasize to women who are considering hysterectomies is to understand that after a hysterectomy your libido is almost completely gone. There are many women in my family that have had endometriosis and have chosen hysterectomies for their “cures”. All have agreed that if they had known how negatively they would feel about intimacy and love with their husbands, boyfriends or partners that they wouldn’t have undergone such an invasive surgery. You can’t get it back-it’s permanent!!

Now I am 53, and I have fully embraced integrative medicine-(i.e.- acupuncture, homeopathics, supplements, organic foods, massage therapy, herbs, Chi Nei Tsang-chinese abdominal massage). They have been part of my life for the past 10 yrs. These modalities make my syndromes bearable. Yes, it is financially a bit more expensive but emotionally, physically and spiritually it is a bargain. While the initial choice of having a complete hysterectomy appeared to have many benefits- I have learned the hard way that for me it was the most physically debilitating life alteration experience. Personally, I believe that my choice of a complete hysterectomy significantly precipitated the downward spiral of my health.

Hopefully, I have planted a seed of doubt about hysterectomies being a cure all for endometriosis. Indeed they are not. There are many avenues available at this time to assist you in making a more informed decision regarding the short and long-term outcomes of a complete hysterectomy. Use all the complementary medicines that you can find and afford to help alleviate or decrease your undesirable symptoms. It will be worth it in the end. As well, talk with many women who have had the surgery. Believe what they say-they are living the truth.

This article was posted by Jeanne via “Jeanne’s Endo Blog” at www.endendoat.blogspot.com.

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


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Reading: "Jeanne’s Endo Blog": Guest Blog – Roberta’s Twenty Plus Year Rollercoaster… Roberta’s Experiences Following Hysterectomy…

12 comments

1 Yaya { 03.23.09 at 7:14 pm }

Roberta,
Thank you for sharing your struggles in the hopes that it will make other women with endometriosis realize that a hysterectomy is not the end all/cure all for endometriosis. I must admit I used to think a hysterectomy was the “cure” until Jeanne informed me otherwise. I can’t imagine going through that and then still having so much pain.

2 Jeanne { 03.23.09 at 7:26 pm }

Alicia,

Thank you for your comments. Roberta has been through so much (including a great deal of behind-the-scenes things that didn’t quite fit in her story). It is very sad to me to have watched her incredible struggles. I have such admiration for her strength and courage!!!

Jeanne

3 My Endo Journey { 03.24.09 at 1:28 am }

Thanks for the post!!!

4 Jeanne { 03.24.09 at 4:55 am }

Isn’t this a wonderfully written post?

Jeanne

5 Amanda { 03.24.09 at 6:53 am }

Thanks Jeanne for posting this and THANK YOU Roberta for writing it!

I have to say that whilst my mum and Grandma both had early hysterectomies (36 and 40) and they and several of the people I know of a similar age to my mum have told me they have never regretted having them I have always felt very uncomfortable about the thought of having one myself. I never knew quite why because everyone seemed to think they were a great idea, once you had had kids and didn’t want anymore – but even at that stage the thought kinda scared me. It was just so final and it is really helpful and informative to read about the negatives for once rather than just the positives!

It does make me so sad though when I read such stories as these – the heartfelt pain and trauma people have to go through because of Endometriosis and the treatments that doctors choose for them… it’s such a shame that because you feel so ill you are sometimes willing to try anything to make it go away! I had problems with my periods from the age of 13 or 14 I forget exactly when they started because for so long I was told they were just getting into a pattern – but in a way I was so naive because I was so young I didn’t know that I could question what the doctor said – I’ve learnt to do that as I get older and I think that is one of the biggest things we can do – like when you had a doctor that didn’t tell you about your endometriosis!!

I’m glad you’re using complementary therapies – after my Lupron experience my uncle, who is a reflexologist, started work on helping my body get rid of the toxins (something my body is naturally very bad at – a session with him in his iridologist practise made me aware of that) and I’m sure I’d have suffered far longer if not for his help.

Thank you once again for sharing your journey and experience with us.

Amanda x

6 Jeanne { 03.24.09 at 1:26 pm }

Amanda,

Thank you for your comments!

The information available regarding hysterectomy alternatives can get skewed.

Many people, I have found, tend to have very strong opinions about them one way or another and often patients don’t get a well-rounded picture of the possible outcomes.

I have met many women who expressed that they didn’t want a hysterectomy but felt desperate to do anything that might relieve some of their pain.

Often, these same women had not yet tried options such as Chi Nei Tsang, acupuncture, chiropractic, physical therapy for pelvic pain, Maya abdominal massage, homeopathy, etc.

Yes, questioning doctors and advocating for ourselves is crucial.

The fact that Roberta’s first surgeon didn’t feel it necessary to mention that she has endometriosis is just a classic example of the type of mistreatment endo patients so often get from the medical community. It saddens me greatly.

Yes, complementary medicines can really be helpful. Where I used to live, there was a really good reflexologist less than 10 minutes away. I used to go weekly. That was many years ago (11 years) and I still miss it!

Amanda, thank you for your detailed comment and I’m sure Roberta will appreciate your feedback.

Jeanne
xo

7 endochick { 03.25.09 at 3:37 pm }

Thanks, Roberta for sharing your story. And thanks Jeanne for posting it! I posted on my blog about this post to help bring more traffic to Roberta’s personal story so hopefully more women can be helped by it!

My mother had a hysterectomy at the age of 28. While hers was unavoidable – she was bleeding to death, they still left an ovary so she would go into menopause. This resulted in her nearly bleeding to death internally from endo implantations that were growing for over 5 years as she suffered while dr’s ignored her cries of pain. Finally that ovary was removed and she was cleaned out by a great dr. But she had adhesions from the hysterectomy. To this day she is dependent on sleep medication because of occasional hot flashes and chronic insomnia. She has headaches, body fatigue, and yes, gallbladder problems. When I spoke with her last week she couldn’t even eat cereal without it bothering her! She has anxiety – really the list is endless. And she can’t take hormones because her mother had breast and lymph node cancer and just passed away from a heart attack.

There’s another lady I know who had her hysterectomy about a year ago and now looking at having gallbladder surgery here in a few weeks. Hers is full of stones! She’s in constant pain and misery and can’t eat.

Is THIS what the Dr’s mean when they say “you’ll be trading one host of problems for another?”

8 Jeanne { 03.25.09 at 7:08 pm }

Endochick,

Thank you for referring your readers back here to Roberta’s story. I think her story is important because it includes many of the issues that women simply don’t tend to learn about from their doctors.

My intention is to help women make informed choices. If they only ever get to hear the suggestions/urgings to have a hysterectomy and never get to hear about the potential consequences that could be associated with their decision, to me they have been robbed of the opportunity to learn the big picture.

I’m very sorry about what happened to your mother.

The bottom line for me is that patients have a right to make informed decisions. To my way of thinking, that may require obtaining information from a variety of sources.

As Roberta said in her piece, talking with patients who have been through it can be helpful.

Jeanne

9 Liz Hamil l ScottNo Gravatar { 07.27.10 at 4:29 pm }

Hi Jeanne and Roberta–I do appreciate this post, for its dissenting opinion.

BUT…for me, my recent hysterectomy was truly the last resort, and so far seems to be absolutely the best possible thing I could have done to get my life back. All those alternative therapies mentioned–tried ’em all, including the pelvic physical therapy, acupuncture, massage, Eastern herbs, Western herbs, diet changes, and a few other things. Got sicker. Tried all the typical Western therapies as well. Got sicker. My surgeon refused me a hysterectomy for years on the grounds that I was too young and my she knows that hyst is not a cure for endo. Finally, earlier this year, I insisted. I was losing quality of life month over month.

The pathology report revealed that I didn’t just have endo–I had adenomyosis and endosalpingioosis as well.

Now, only 4 months post-op, I’m more functional and in less pain than I’ve felt in 3 years. I’m off opioid painkillers for the first time in 4 years. True, I’ve got a lot of years ahead of me. But I truly believe, in my heart of hearts, that my hysterectomy was not just the best, but the ONLY choice for me. I’m not taking any hormone replacements–my surgeon doesn’t recommend them for her endo patients.

Oh, and my libido isn’t gone. In fact, it’s starting to return with a vengeance!

I’m not saying that a hyst is right for every woman. But it’s not wrong for every woman either.

10 JeanneNo Gravatar { 07.28.10 at 1:38 am }

Welcome Liz!

Thank you for your feedback on Roberta’s guest blog post regarding her personal experiences following hysterectomy. 🙂

You used the term “dissenting opinion”. I associate “dissent” with a difference of opinion. Since Roberta was relating her own personal experience in this post, I don’t know that there is anything to “dissent” about. What I mean to say is that Roberta is entitled to share her thoughts about her own personal experience. She has analyzed what happened to her is sharing her personal thoughts about it.

I can’t speak for her but she is a “real life” friend of mine and we served as co-leaders of an endometriosis support group (locally/in person) for awhile. So, I know that her intent with this guest blog post was to share her personal experiences following hysterectomy. It wasn’t intended to debate what a given patient should or shouldn’t do. Her decision to have a hysterectomy has profoundly impacted her life. She simply shared her experience and the conclusions she’s drawn from it.

I fully understand that your experience differs from hers. Please understand that I would never in a million years “judge” anyone for reaching the decision to have a hysterectomy. I know Roberta well enough to know that she wouldn’t either.

This sentence from Roberta, I am guessing, may have been (?) what prompted you to use the term “dissenting opinion”:

“I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing”.

This is Roberta’s opinion. I know from talking with her that Roberta believes that the hormones she took are linked to her breast cancer. I believe that is what prompted her to make that comment.

Liz, please rest assured that Roberta’s post is most definitely not intended to place judgment on anyone.

I am very happy for you that you are more functional and in less pain/off of opioid painkillers! That’s wonderful! I’m glad that you are comfortable with your decision. It’s your body and only you could make the decision!

Every woman is different. While many women do have decreased libido following hysterectomy, others – like you – have the opposite. There is no blanket response that can be predicted for all patients, in my opinion.

I agree with you that a hysterectomy is not “wrong for every women either”. I think I can safely speak for Roberta here when I say that neither of us would state that “hysterectomy is wrong for every woman”. That was not the point of Roberta’s post.

Many, many women I have met (in person) or “met” (online) have been downright bullied by those around them (including everyone from loved ones to doctors) to have a hysterectomy. Heck, my own mother has pressured me to have a hysterectomy on numerous occasions. I exchanged messages with an online friend today who feels (this was her word) “bullied” by her friends and family to have a hysterectomy. She very recently suffered a pregnancy loss and she does not want a hysterectomy. Yet the people around her are constantly pushing the issue. She doesn’t know how to handle their constant comments.

Again, I understand that you had sort of the opposite experience in the aspect that you were insisting that your doctor perform a hysterectomy. Please understand that there are many, many women who are talked into hysterectomies (by doctors who are out of treatment ideas and/or by the patients’ loved ones).

The purpose of this post was not to serve as an “anti-hysterectomy” post. I asked Roberta to share her story on a guest blog post after watching, again and again, women in our local support group who were very grateful for her perspective. Roberta took time out of her schedule to meet with many women to answer their questions. Some went on to have hysterectomies and others didn’t. Roberta definitely never presumed to tell anyone what they should do with their bodies. She just shared her personal experience with fellow patients. She took the time and energy to talk with these women in an effort to help them make fully informed decisions.

As per this Newsweek article:

“Nearly 600,000 hysterectomies are performed annually in the United States, according to the Centers for Disease Control (CDC), a rate that is down from a peak of 740,000 in 1975. The U.S. still has one of world’s highest hysterectomy rates, however, and in recent years, major medical organizations have worked hard to educate both doctors and patients on alternatives to surgery, as well as ways to minimize the surgery’s long-term effects”.

Again, I am very happy for you that you are pleased with your surgery results! Thank you very much for your feedback! 😉

Take care,

Jeanne

11 AmandaNo Gravatar { 07.28.10 at 6:16 am }

Hi Liz,

thanks for sharing your own story with us here at Chronic Healing: I feel I know Jeanne well enough to guess that she will love having this topic brought to the fore once more with your comment, because it is such a massive decision for any woman to make and posts such as these help women to make more informed choices.

I read Roberta’s guest post with interest, never having had the chance to really hear from anyone other than my mum about life after a hysterectomy. My mum, like you, never looked back after her hysterectomy and the idea of my having one in the future has often be put forward as an option to help with my Endo. I would have blindly followed her path, had I not read a post such as this, and so I am grateful for the opportunity to read something that will make me really consider my choice far more than I might have previously.

That being said, I truly appreciate you adding your own story to this thread as it creates a good balance: reading about your experience makes me more aware than ever that, as with most medical treatments/surgeries, no-one can truly say how any woman will respond to them. I knew this on a smaller scale, having seen my sister settle happily with a contraceptive pill to deal with her symptoms whilst I struggled through so many different kinds of treatment, including zoladex injections and synarel nasal spray, without any real relief from my pain. However, your comment brings home how something even as large as a hysterectomy can cause such different reactions in different women.

It truly is a personal choice, and one that no-one should be “bullied” into taking, and I know exactly why Jeanne feels so strongly that these kinds of posts need to be written. Too often, hysterectomies are put forward as the best option in the world, and for some women they are. But for those who suffer afterwards, regretting their decision, I can understand the desire to share their experiences to try and make others stop and make sure that it really is right for them and not something that has been forced upon them. Your story shows clearly how right the decision was for you, because you say yourself that you pushed for it. I am glad that things worked out so well for you and I only hope that in my own future, when faced with the hysterectomy option myself (at 26 and childless it is obviously not an option facing me right now) that I will know as surely as you did which decision I want to make. Whatever I choose, though, I will remember with gratitude, people like yourself, Roberta and Jeanne for sharing your own personal stories and helping me to see things from a more informed perspective.

Thank you xx
.-= Amanda´s last blog ..Wedding Update – The Blessing =-.

12 JeanneNo Gravatar { 07.28.10 at 11:35 am }

Thank you so much, Amanda and Liz, for your feedback on this important topic!

Jeanne

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