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Distended/SEVERE bloating/fatigue that is NOT cyclical. Options success story anyone? Distended/SEVERE bloating/fatigue that is NOT cyclical. Options success story anyone?

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  #1  
Unread 06-05-2010, 03:08 AM
Distended/SEVERE bloating/fatigue that is NOT cyclical. Options success story anyone?

I am a 40 y.o. with a gyno history that was unremarkable up until 2 years ago. I have three children and I had no problems conceiving or delivering my kiddos vaginally.

My issues began with a HEAVY (very abnormal for me) hemorrhage/type meunstral cycle 1 yr. after my third child was born. Shortly thereafter, I developed major fatigue and bloating like I was 6 months pregnant. I was tested for anemia and that and other blood work came back "normal".

Later that year, I found a lump in my breast; it too came back normal. Subsequently, I had a colonoscopy and was also tested for celiac disease (I did have a minor change in bowel patterns); both medical exams came back normal.

Following, my gyno. started me on Loestrin. Five weeks into taking the pill, I "crashed". I had horrible mood lability; my fatigue and bloating was exacerbated. I discontinued the Loestrin.

5 months later my gyno recommended an exploratory laparoscopy. My internist concurred and wanted to be sure that a translucent tumor or the like wasn't being overlooked.

4 days prior to the lapy, I had dibilitating pain post-sex with my husband. It took motrin and 5 hours of excrutiating pain before it subsided (this has been my one and only pain episode).

During my lapy, it was discovered that I had moderate endometriosis. A general surgeon was called in to remove my appendix and to remove endo. adhesions from my colon (which likely explains my change in bowel patterns prior).

At this point my gyno recommended a hysterectomy and also to remove one ovary.

Following the lapy, she also recommended I see a reproductive endocrinologist for a 2nd opinion. The doc. was adamant that he would not perform a full hysterectomy/oopherectomy without being sure that it would be successful both for the endometriosis and for my other symptoms (fatigue and extensive bloating).

Therefore, he suppressed me on Lupron w/ a Vivelle dot add-back estrogen patch to see how my body would respond. Within 2 months, my bloating and fatigue dissipated. I felt like a new person; like my old self! Unfortunately, one cannot remain on Lupron indefinately or I surely would have opted to do so.

4-5 days after Lupron suppression ended, my SEVERE bloating/fluid retention and fatigue returned. At this point, the endocrinologist recommended a full hysterectomy/ooperectomy with HRT.

My gyno was willing to try prometrium w/ Vivelle dot to see if it would regulate my bloating and fatigue...to no avail.

Then, I started Yaz. I have been on Yaz for 6 weeks. No changes other than my sleep is disturbed (maybe that's stress :-)!

My gynocologist has said for the past 2 years (subsequent to my heavy cycle) that my ovaries do not function properly; the endometriosis is likely contributing to my fatigue and bloating symptoms, but ultimately my issue is hormonal and due to my ovarian function being "abnormal".

I am left to decide whether or not to have a hysterectomy/oopherectomy and then be put on HRT. It's a major medical decision amd I am fearful of the unknown (i.e., long-term ramifications of HRT).

Anyone have a similar story? Anyone that has been able to successfully treat similar symptoms with something other than surgery? Thanks!
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  #2  
Unread 06-05-2010, 04:00 AM
Re: Distended/SEVERE bloating/fatigue that is NOT cyclical. Anyone with a similar sto

Hi, Utterlyconfused!

My story isn't exactly the same, but it is similar. I am 43 years old and just had a laparascopically assisted vaginal hysterectomy (LAVH).

This all started for me back in Fall of 2004 - 6 years ago! - when I had an 8-week-long period. After the 2nd week (my periods were usually a week long) I was at the doctor's office. By the 8th week I was about to lose my mind. I was bleeding heavily enough that I was soaking through an overnight maxi about every 15 minutes. I was definitely anemic. And they couldn't figure out why I was bleeding.

I saw two gynecologists and had numerous tests, including an ultrasound. They said that the thickness of my endometrium / uterine wall was "normal" and they could find no fibroids or other reasons which would explain the heavy bleeding. I was told I had dysmenorrhea (dysfunctional bleeding) and menorrhagia (heavy bleeding). They suggested that the reason why it suddenly got worse was that I was entering perimenopause, which often can cause changes in a woman's cycle.

They put me on the birth control pill to control the bleeding. The idea was that my periods should get lighter and shorter over time. Which would have been nice. Except it didn't really work that way. When I was on the placebos, I would bleed heavily, and once I started back on the effective pills, it would take a while until the bleeding stopped.

At one point, my primary care physician and I realized that I was bleeding heavily enough each cycle that I was becoming anemic each time. So, she put me on a new prescription for Seasonale, which is a birth control pill that you take continuously for 3 months - and have only 4 periods a year. We thought that would help.

At first it did, but then the heavy bleeding returned. I could take just 2 of the placebos and bleed for 21 days or longer. And, certain other medicines interfered with the uptake of the Seasonale, which could cause break-through bleeding. For example, if I needed antibiotics, it would trigger a bleeding episode.

Meanwhile, I was frustrated by the fact that so far, we only had descriptions of my condition - dysfunctional and heavy bleeding - and no root cause. So I continued getting "second opinions" from other doctors. I finally decided to contact a gynecological surgeon, who specialized in cases with heavy bleeding. I am so glad that I did!

I found her this past year (2009) and she was the first doctor who explained to me all the possible causes for heavy bleeding. Then we did a transvaginal ultrasound right in her office - no being sent for a test on a different day somewhere else and waiting for results. She ruled out a number of the possible causes and we were left with my diagnosis: adenomyosis. It fit with all of my symptoms, including the fact that my periods did not improve with the birth control pill.

Then we discussed all of the possible treatment options available to me. My husband and I ruled out an endometrial ablation, because the one recommended for my condition also happens to be one which would make it harder to detect endometrial cancer - and I have an elevated risk for it.

We were told that I could try to "buy time" by remaining on the birth control pills, and hoping that I reached menopause, which would solve the problem. According to the National Institute on Aging - part of the National Institutes of Health - the average age of menopause is 51. And my mother was later than that. My husband and I decided we just couldn't gamble for that long with my health.

We decided we wanted a permanent solution - because we have been dealing with this for 6 years now. Six years of never knowing when I might have break-through bleeding. Six years of near-constant anemia and low energy. Episodes of fainting - including a dangerous one in the shower. This is why we chose the hysterectomy (for me, including removal of the uterus and cervix). For us it is the right solution.

I realize that having a hysterectomy/oopherectomy sounds like a radical step. It is a major surgery. It requires a major commitment. It is a big huge decision - one not to be taken lightly.

But, for me, I just couldn't live like I was. I couldn't keep digging myself out of the anemia hole. My quality of life was very poor. I want to return to a more healthy state. One where I can exercise again. One where we don't have to worry about my bleeding or anemia.

I cannot tell you what is right for you. That is a decision best made by you, your family, and doctor. But, I can share what worked for me and why. I can tell you that it has only been a few days since my surgery, and I already have more energy. I am thrilled with my results.

I do encourage you to explore all of your options. Please consider getting a second, or third, or fifteenth, or one-hundred-and-twenty-seventh opinion. Include a gynecological surgeon in the mix. Try other non-surgical options first, if you think that is better for you. If you make the decision to have the hysterectomy/oopherectomy, and you've gotten additional opinions and explored all your options, I think you'll be more comfortable with your decision, like I was.

Wishing you the best of luck finding the perfect solution for you.
  #3  
Unread 06-05-2010, 07:53 AM
Re: Distended/SEVERE bloating/fatigue that is NOT cyclical. Anyone with a similar sto

You have to make the decision for yourself. It's a really tough one to make. I decided I was tired of dealing with the pressure, exhaustion, painful sex, and bad periods. I am excited but nervous to get my surgery on Monday.
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  #4  
Unread 06-05-2010, 11:36 AM
Re: Distended/SEVERE bloating/fatigue that is NOT cyclical. Anyone with a similar sto

utterlyconfused,



I am so sorry you are having to deal with endo. It really is a terrible disease. I had my lavh/bso at the age of 31 due to stage iv endo.

You mentioned that one of your doctors is/was a reproductive endocrinologist. Was he/she a endometriosis specialist? These docs are highly skilled in dealing with endo and the removal of it. If your RE wasn't, you might consider seeking one out.

It's also important to remember that even if you have a hysterectomy and remove your ovaries, the endo can reappear. If you have time, visit our endometriosis forum and you'll see a wide variety of posts dealing with reoccuring endo issues after a hysterectomy.

Adding HRT back in is also a delicate balance. Unfortunately there isnt any right answer. For me, because of my age, my doctor wants me on it. But, I also know that if any endo was left behind, the estrogen will just be feeding it.

I have been where you are. The unknown is scary. Many women have their hysterectomies and do great for years to come. However, that isnt always the case. All we can do is research, know all of the possible outcomes, and be the best advocates for our own health.

You might also want to visit our endometriosis resources. You will find a wealth of information there as well.

Good luck with your decision and if you do opt for the hysterectomy we will be here for you.

:bunnyhug:
  #5  
Unread 06-05-2010, 09:38 PM
Re: Distended/SEVERE bloating/fatigue that is NOT cyclical. Anyone with a similar sto

Obviously my story is not the same but I too was diagnosed with IBS, tested for celiac disease which did not show up on blood tests. I was put on Lupron as a last ditch effort to put off a hysterectomy due to adenomyosis (seen on ultrasound as I have no visible layers of uterus/endometrium anymore). My gyno also suspected endometriosis due to my bloating and chronic pelvic pain which did show some improvement on oral progestin. She would have done surgery to diagnose and/or remove endo implants but due to the adenomyosis, knew that it would only take care of half the problem and I was not mentally ready for a hysterectomy. My bleeding had gotten really bad while on continuous bcps followed by progestin. So I tried Lupron and got maybe 3 months of relief out of the 6. And now after one dose of Depo Provera, I have been bleeding mildly for 2 weeks now and in pain for the whole time. I guess I give it a few more months (one more dose) to see if that improves, but I'm guessing from others' stories that it won't.

I will not go on Lupron again, one round was enough for me. It's a 'band-aid," and an expensive and dangerous one at that. but it did answer for me just how much of my "digestive" problems were endo related. During the last month of Lupron, everyone wanted to know what I'd done to lose so much "weight" so quickly. I didn't lose any "weight" just bloating. And now, I look at least 5 months pregnant. With no real weight change, either. It's bloat and I am convinced now that it isn't "IBS" it's endometriosis causing inflammation. I sincerely hope it's not on my actual intestines, but would not be surprised if it is.
  #6  
Unread 06-06-2010, 07:05 AM
Distended/SEVERE bloating/fatigue that is NOT cyclical. Options success story anyone?

Thanks so much for sharing your story & for your support. I am happy for you that you finally got a diagnosis which then allowed you to make your decision albeit it a difficult one. Physicians abide by the medical model meaning they treat "conditions" not symptoms.

For me, I am most concerned about also removing my ovaries & the unknown of how I will respond to HRT. I have a family history of osteoperosis, heart disease & dimentia. Therefore I will need HRT. Then is the issue of the research raising questions about the bodies natural production of our hormones vs. those "given" to us. Although who knows what problems could be caused by my dysfunctional ovaries & endo. & those long term effects.

Tough decisions...thank you again for listening!




  Quote:
Originally Posted by amethystjade View Post
Hi, Utterlyconfused!

My story isn't exactly the same, but it is similar. I am 43 years old and just had a laparascopically assisted vaginal hysterectomy (LAVH).

This all started for me back in Fall of 2004 - 6 years ago! - when I had an 8-week-long period. After the 2nd week (my periods were usually a week long) I was at the doctor's office. By the 8th week I was about to lose my mind. I was bleeding heavily enough that I was soaking through an overnight maxi about every 15 minutes. I was definitely anemic. And they couldn't figure out why I was bleeding.

I saw two gynecologists and had numerous tests, including an ultrasound. They said that the thickness of my endometrium / uterine wall was "normal" and they could find no fibroids or other reasons which would explain the heavy bleeding. I was told I had dysmenorrhea (dysfunctional bleeding) and menorrhagia (heavy bleeding). They suggested that the reason why it suddenly got worse was that I was entering perimenopause, which often can cause changes in a woman's cycle.

They put me on the birth control pill to control the bleeding. The idea was that my periods should get lighter and shorter over time. Which would have been nice. Except it didn't really work that way. When I was on the placebos, I would bleed heavily, and once I started back on the effective pills, it would take a while until the bleeding stopped.

At one point, my primary care physician and I realized that I was bleeding heavily enough each cycle that I was becoming anemic each time. So, she put me on a new prescription for Seasonale, which is a birth control pill that you take continuously for 3 months - and have only 4 periods a year. We thought that would help.

At first it did, but then the heavy bleeding returned. I could take just 2 of the placebos and bleed for 21 days or longer. And, certain other medicines interfered with the uptake of the Seasonale, which could cause break-through bleeding. For example, if I needed antibiotics, it would trigger a bleeding episode.

Meanwhile, I was frustrated by the fact that so far, we only had descriptions of my condition - dysfunctional and heavy bleeding - and no root cause. So I continued getting "second opinions" from other doctors. I finally decided to contact a gynecological surgeon, who specialized in cases with heavy bleeding. I am so glad that I did!

I found her this past year (2009) and she was the first doctor who explained to me all the possible causes for heavy bleeding. Then we did a transvaginal ultrasound right in her office - no being sent for a test on a different day somewhere else and waiting for results. She ruled out a number of the possible causes and we were left with my diagnosis: adenomyosis. It fit with all of my symptoms, including the fact that my periods did not improve with the birth control pill.

Then we discussed all of the possible treatment options available to me. My husband and I ruled out an endometrial ablation, because the one recommended for my condition also happens to be one which would make it harder to detect endometrial cancer - and I have an elevated risk for it.

We were told that I could try to "buy time" by remaining on the birth control pills, and hoping that I reached menopause, which would solve the problem. According to the National Institute on Aging - part of the National Institutes of Health - the average age of menopause is 51. And my mother was later than that. My husband and I decided we just couldn't gamble for that long with my health.

We decided we wanted a permanent solution - because we have been dealing with this for 6 years now. Six years of never knowing when I might have break-through bleeding. Six years of near-constant anemia and low energy. Episodes of fainting - including a dangerous one in the shower. This is why we chose the hysterectomy (for me, including removal of the uterus and cervix). For us it is the right solution.

I realize that having a hysterectomy/oopherectomy sounds like a radical step. It is a major surgery. It requires a major commitment. It is a big huge decision - one not to be taken lightly.

But, for me, I just couldn't live like I was. I couldn't keep digging myself out of the anemia hole. My quality of life was very poor. I want to return to a more healthy state. One where I can exercise again. One where we don't have to worry about my bleeding or anemia.

I cannot tell you what is right for you. That is a decision best made by you, your family, and doctor. But, I can share what worked for me and why. I can tell you that it has only been a few days since my surgery, and I already have more energy. I am thrilled with my results.

I do encourage you to explore all of your options. Please consider getting a second, or third, or fifteenth, or one-hundred-and-twenty-seventh opinion. Include a gynecological surgeon in the mix. Try other non-surgical options first, if you think that is better for you. If you make the decision to have the hysterectomy/oopherectomy, and you've gotten additional opinions and explored all your options, I think you'll be more comfortable with your decision, like I was.

Wishing you the best of luck finding the perfect solution for you.
  #7  
Unread 06-06-2010, 07:13 AM
Distended/SEVERE bloating/fatigue that is NOT cyclical. Options success story anyone?

Ultimately, I have to make the decision for myself. As scary as it is, I cannot get these years back with my family, etc. I'll have to be prepared as much as possible for post surgery HRT if the hyst/ooph is what I choose, and move forward with some clarity. Thank you for your support!




  Quote:
Originally Posted by kward View Post
You have to make the decision for yourself. It's a really tough one to make. I decided I was tired of dealing with the pressure, exhaustion, painful sex, and bad periods. I am excited but nervous to get my surgery on Monday.
  #8  
Unread 06-06-2010, 11:17 AM
Any success stories?

Anyone with alternative versus hyst/ ooph? Alternately, anyone that has a success story to share?!
  #9  
Unread 06-06-2010, 06:21 PM
Re: Any success stories?

I guess we would need to know what your diagnosis is. Some conditions are more easily resolved without a hysterectomy, and some like endometriosis will not necessarily improve even if a hysterectomy is performed.
  #10  
Unread 06-06-2010, 06:59 PM
Re: Any success stories?

Here is a link to the Options Success Stories: https://www.hystersisters.com/vb2/forumdisplay.php?f=216

Good luck on your research. I am sending huge cyberhugs
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