Considering Hyst after years of endo pain

Hello to all of the hystersisters. This is such a great site. I feel so privileged to have found all of you.

I am new to this site. To fill you in a little, I'm 36, not married, and have no kids (other than my canine children...lol.) I want to return to veterinary school. I had to take a medical leave before my junior year several years ago due to another medical problem, which has now resolved, but my pelvic pain is preventing me from returning. I have stage 4 endometriosis with suspected adenomyosis. I've had five laparoscopies, which haven't helped my pain at all, and I've tried almost every medical treatment. I even had Botox injected into my pelvic floor muscles, which has shown promise in helping other women with chronic pelvic pain. It didn't help me at all though. My pain is so bad now that I'm unable to function at all for at least two weeks of every month. My endometriosis rules my life - that's why I chose the screen name endoruled.

Now the pain is so bad that I can no longer tolerate it. I feel like I have aged tremendously over the last couple of months from the severe pain. I'm at the point now that I'm considering a hyst with removal of both ovaries. I recognize that endometriosis can persist despite this radical surgery, but I fear that is the only option I have left. I also have LOTS of adhesions.

I would greatly appreciate any input or advice. I want my life back so bad. Yes, I would like to have kids, but I'm someone that would definitely consider adoption. Thanks in advance to everyone. I look forward to participating in this forum in the future. I've read some of the previous posts, and I can tell that all of you are incredibly warm and caring. What an excellent group of gals!

Take care, hystersisters!

Welcome to the site!

I am so sorry that you are dealing with so much pain and that you have had medical issues for some time.

Adeno can be "cured" by a hyst, but as you are aware, there is actually no "cure" for endo, just treatment and hopefully pain management.

I highly recommend you find an edno specialist --one who is up to date on the latest endo treatments and who is also skilled at removing as much endo as possible during a surgery. Finding an endometriosis specialist Some other options include a reproductive endocrinologist who may be knowledgeable about endo, or agyn/oncologist, who would have additional training required to remove the endo.

You also need a dr who knows how to treat women with endo after a hyst and BSO as HRT choices are very limited.

Here are a few resources that you may find benefitial:
Endo/Adeno Resources
Medications for endo
Endo and Post Hyst HRT
Progesterone to treat endo
Endometriosis association

Do know as much as you can about endo and how it can be treated. There are pros and cons to having a hyst so it is not a decision to be made lightly. There are women who have had great success after having a hyst for endo-- here is a link to some of their stories: Endo/Adeno: Stories of Triumph over Pain.

However, not all women find the relief they seek, or encounter additional health issues along the way.

I had my hyst for endo a few years ago, and I do not regret my decision at all. However, I was young so even though I have Stage IV endo, for my over all health it was best for me to keep my ovaries. And the endo on my bowel walls was left untouched. Thus, my pain is beginnig to increase. Prior to my hyst I had really had no pain, just continous bleeding--over 2 years by the time I had my hyst.

I wish you the best and you research to make the right decision for you and your cirucmstances.

HI

I sure can understand and sympathize with your screen name and I'm sorry your life has been full of so much pain.

I was 34 when I had my TAH/BSO for endo and I know this decision can be very hard to make. Especially for women with endo because there are no guarantees that a hysterectomy will be successful in managing the pain.

(((Weiser))) provided some wonderful links to read. I think it will be very helpful to learn as much about this complex disease as possible so you are better informed about the pros and cons to having a hysterectomy.

My surgery has been very successful at treating my endo pain. It has been 4 years since my surgery and I have not had any problems with my endo returning. I do know that I am not out of the woods yet, because I have read stories that some women may be free of pain for 7-10 years and then they find they start having the same old problems again.

I did want to share some things that you may want to research before making your decision. The biggest thing that threw me for a loop was hormones and the impact they have on our physical and emotional well being. I had my ovaries removed because there is a higher success rate for endo women when their ovaries are removed. That put me in to an instant surgical menopause and some of the symptoms I experienced from a lack of hormones have not been pleasant.

Estrogen feeds endo, so many doctors have women wait for a period of 3-6 months before starting estrogen therapy. If there is any microscopic endo left behind after surgery, then waiting for the time frame is supposed to help the remaing endo "dry up" or "starve off".

My doctor also gave me 3 months of lupron therapy after my hysterectomy before I was allowed to start using estrogen.

It is also important to know that progesterone inhibits the growth of endo. That is why some women are able to control their endo with using Natural progesterone. Many doctors (but not enough) have women use progesterone with their estrogen after a hysterectomy if they had endo. So it will be very helpful to talk with your doctor and find out their approach to using HRT if you do decide to have a hysterectomy.

It may also be good to find out what type of surgery will be performed. Vaginal or abdominal. I have read that it is much better to have an abdominal surgery because the doctor is better able to see and remove ALL the endo. That is one of the biggest key factors in having a successful outcome. ALL the endo needs to be removed. If any is left behind after the surgery, then it may continue to grow and spread. If you have endo on your bowels or bladder, it can complicate things further because it is very hard to remove the endo from these organs.

It is very important that your doctor is skilled at reconizing and removing the different types of endo and is aware of the extra precautions that should be used for women with endo.

Best Wishes and many BIG 's while you make this tough decision.

Hi there.

troubledtabby has given so much information! So I won't go over all that again- thanks tabby.

But I do have so much sympathy for you. I had endo for years. It was first noticed over twenty years ago when i wanted to start a family and I had a lap to have a look inside. Since then I've had two lots of laser treatments, and finally the hyst last November. When my gyne last did the laser treatment, one lot of scarring was so bad she asked me if I'd had my uterus repositioned in the past!

The hyst also revealed adeno (I hadn't heard of it before) and some fibroids too. She said no wonder I was in so much pain!!!!

I had everything removed as my surgeon suggested it to help prevent further surgery in the future. I've had my fill of gyne surgery!

I had a wait of six weeks before starting estrogen only on a low dose. She is very certain that she has removed every last piece of endo as it was on the organs she removed. I realise this can't be guaranteed but I'm hopeful.

My very best wishes to you. It is never an easy decision to make but I know how miserable the endo can make you feel.

I suffered from endo for a long time too. After I was diagnosed it was 16 years. I had many surgeries for endo too. I had done every treatment available as well. I also tried herbals and natural progesterone cream.

I am 36, married, and we do not have children other than fur children. It is a hard decision to make.

I had my a TAH/BSO on 3/28 of this year. I feel better than I have in years

I haven't been taking HRT. I'm using supplements, herbs, and natural progesterone cream. I have had a few hot flashes and night sweats, but over all I can't complain.

My biggest suggestion is to see a specialist like other sisters have said. I'm greatful I had a specialist do my surgery. I just wish I would of found him alot sooner.

My specialist specializes in endo and menopause. I did alot of research on this site and the web. Then I went to see him. I learned alot and he was very helpful to me. He also supported my decision to not use HRT unless I needed to.

I would use HRT if I need too, but so far so good.

feel free to email me if you want to talk with someone.

Best of luck with your decision.

Sharon