Am I justified in requesting hysterectomy?

I wonder if anyone here could give me some insight.

I'm 47. I've had severe dysmenorrhea (cramps) since I was 13. When I was 16 my doctor put me on birth control pills after pain medication failed to control the cramps. This worked great for a few years, and then over the years it just didn't work as well (though it did mitigate the pain). I'm not sure whether it stopped working because the dosage kept getting reduced or because something in me changed. When I was in my 30s I went off the pill to try to get pregnant. When that didn't happen, I had a laparascopy and was told I had endometriosis. The doctor cauterized a number of small lesions. It didn't help my cramps (in fact, they got worse), and I didn't get pregnant. My periods got more and more irregular and painful. (That's the only treatment I've ever received for endometriosis.)

Ultimately I gave up and we adopted two children. I tried to stay off the pill (there didn't seem to be much point), but my periods continued to be irregular and painful and I also had a lot of spotting in between. I had an ultrasound and was told I have adenomyosis. (I don't think it's very severe because I'm always told that my uterus is "small.") So the doctor put me back on birth control pills. I talked her into letting me take them full-time, so I wouldn't have periods. This has worked well off and on, but lately I am having a lot of spotting and some "miniperiods" with cramps.

If I go off the pills and have a full-fledged period, I have cramps for up to five days. I am able to function by taking large doses of ibuprofen round the clock, but the pain never fully goes away.

My doctor is pretty conservative, and I guess it's good she's not knife-happy (she's a family dr and would have to refer me to an OB/GYN anyway), but I wonder if I can't push her a little harder for a more permanent solution.

I did some research on endometrial ablation, and it sounds like it's not recommended for endometriosis or adenomyosis or with a tipped uterus, which I also have. So that leaves me with one alternative. I shouldn't be flippant, I guess, but I feel like my uterus has never caused me anything but pain, so what's the point of keeping it? (Though I think I ought to keep my ovaries.)

Has anyone been in a similar situation? Am I better off swallowing ibuprofen than having major surgery? Should I just wait (5 years, 10 years?) for menopause to solve the problem? Would a hysterectomy resolve my pain problems, or could enough endometrial implants remain behind to continue to cause problems? I'm due to see my doctor in a couple of weeks, and I want to be informed.

Thinker
Dysmenorrhea, endometriosis, adenomyosis

I started my period when I was 11. I had my first laporoscopy when I was 14. Second when I was 20. A tubal when I was 24. Third lap when I was 27. And my last one this past February. The doctor I was seeing that did my lap when I was 27 said I had endo along with my cysts. He said there was nothing he could do for me. I could not take birth control pills due to severe headaches. I had a cyst burst and went to the ER. They did ultrasounds and found two on my left ovary and "numerous" on my right ovary. Whatever "numerous" means. So I went back in when the pain was not getting better. He did a pelvic exam that made me cry. And he had the gall to ask me if that hurt. That was when I decided to find a new doctor. I called the new doctor and told them up front I wanted a hyst. I walked through everyday in pain. Sometimes excruciating and other times less, but always there. The new DR listened to what I had to say, actually read my chart. He did the lap in Feb. with the point of removing my right ovary and tube. After surgery, he told me he didn't remove them because I would need a hyst, that it was that bad. So here I am 5 weeks post op and no pain. I mean yes, I have the soreness from healing and menapausal signs, but NO PAIN! I feel it is the best decision I ever made.

You have to go in knowing what you want and don't be afraid to speak your mind. If I hadn't taken initiative and found a new DR, I would be in pain as we speak. Probably crying myself to sleep. I know there are so many things to consider with a hyst, but I was willing at the time of my choice to take that risk. AND I would never regret that choice.

Hope this helps.

Shannon

Hi Thinker,

Endo is just such a nasty disease! The thing about having a hyst for endo is that even this is no guarantee that you'll be endo-free forever. Many women do just great and never have a recurrance, but others are not as lucky. So you need to be aware that even after a hyst ... the endo could come back.

I highly recommend that you discuss all your treatment options with a gynecologist - someone who treats endo patients regularly - and then get at least one other opinion from another gyn. Why 2 gyns - because they don't all agree on the treatment choices and you owe it to yourself to know as much as possible about your situation and your options before you make a final decision about treatment.

I had a TAH/BSO about 2 1/2 years ago, primarily due to severe stage 4 endo. I also had a history of fibroids and it turns out I had adeno too. I was 46 when I had my surgery. All in all, I've done very well. But I have learned that I cannot take estrogen without having endo-like symptoms return. So I've been estrogen-free for about a year now. For some women, it's very difficult to go without estrogen. Although I do have night sweats and some hot flashes, I'm handling it pretty well.

Keep reading, keep asking questions, and we'll do our best to provide support, whatever you decide. Keep us posted on how you are doing.

Beth

Thinker,
I too have ahd all of your syptoms it seems plus I've had 2 leep's and a lap for pre-cancerous cells to no avail. I too had a dr that wasn't really listening to me. I HAD to find a new dr because I moved to another state. My problems have continued and my new dr has seen and heard me complian over all the bleeding I've had(flooding,clots etc..)so he suggested I consider it. I told him I was soooo over needing a uterus and I could kiss him for listening to me and considering I know my body best. With his help I will be pain and blood free (aside from recovery) after July 14. I wish you luck in your decision and hope you get satisfaction one way or the other.
Tonya

Dear Thinker,

Sure I think you are justified in your request.
It is of course a very permanent option and carries it's risks.

Although not a cure, another option for you may be the Mirena IUD. It could possibly get you thru to menopause when adenomyosis tends to subside, and as far as endometriosis goes,
here is a link to some HysterSister's testimonials on the matter. Some particularly positive comments were made by BethStuart.
https://www.hystersisters.com/vb2/sho...irena+fibroids

The Mirena IUD is fairly new in the USA(2001) and contains progestins only. The progestin is in lower amounts than that of bcps and therefore dont tend to cause as much side effects as people tend to hear about with progestins (though I didnt have them) and it's effects are more direct considering it's location. It usually decreases the monthly flow and a good number of women dont even get a period with it. It is good for five years. I have one.

Though it's primary use is as a form of birth control, it is used in cases of endometrial hyperplasia (sometimes even in low stage cancer), fibroids (if there isnt too much distortion), cases of excessive bleeding where the cause has been elusive, endometriosis, and adenomyosis.
Mine is doing just fine now (I have it to prevent recurrence of hyperplasia) but I will admit that the placement is not fun, and it seems that good placement is somewhat a matter of luck (having had 2 placed in the past) or ongoing cramping may occur. Mine has been so comfortable that I've had moments of doubt that it was there.

http://www.biomedcentral.com/1534-5874/2/417
http://www.findarticles.com/cf_dls/...1/article.jhtml
http://www.endo.org.uk/info.html (only makes quick mention of the Mirena)

Good luck.

Pat

Hi...sounds like you are telling my story, step by step...except the part of getting pregnant. Thank God I never had a problem with that. Got my period at 12. Horrible pain from day one. Was put on every pain pill imaginable...nothing worked. Out of school 4 days a month. Finally when I turned 16...a Gyno put me on the pill. Worked like a miracle! No more cramps....light flow for only 3 days.....THEN.....as I got older and had kids... it started all over again. Flooding...pain beyond belief...clots the size of my fist...etc...etc....My Gyno told me to stay on the pilll non-stop to stop my periods...it worked for about 3-4 months...then...the flood gates opened up again. FINALLY....almost 1 year ago in June...we decided to do IT! Everything out! I had adenomyosis, fibroids, and endo. He said I was a mess...no wonder I suffered for so many years! Now...I'm almost 1 yr. post op and doing great! Taking 2mg. of Estrace since surgery. So far...so good! I'll keep my fingers crossed! Good Luck!

Thanks so much for your understanding and comments. I love the comment about being "so over needing a uterus"! That's how I feel.

My doctor did suggest an IUD, but you know -- I had enough things stuck in my uterus when I was undergoing infertility testing and treatment, and I just don't want to go down that path again.

I see my doctor in a couple of weeks, and I'll look into getting a referral to an OB/GYN (although I hate going to their offices and seeing all the pregnant women or having my appointment canceled because they're off delivering a baby).

p.s. What really gets me is how much noise we have to make to get anyone to take our pain seriously. I've read so many posts here and it's the same story. The only time I've ever been treated for my endometriosis was when it seemed to be getting in the way of my becoming pregnant. Otherwise, with my cramps, endometriosis, and adenomyosis, it was always "Take two Motrin and call me in the morning." If you're not incapacitated by cramps the doctors don't seem to care. How about the fact that I barely get through those three days a month and only go to work and take care of the kids because that's just the kind of person I am?

I cannot believe how similar our stories are - except that sadly our adoption failed the day before placement. I had surgical excision (not laser) of the endo in 2000 because there was a risk to my bowel and bladder ... the endo has returned but have just had diagnosis of fibroids - waiting to see the GP for full results and hopefully referred on to Gynae. I now have flooding and irregular periods to add to the severe cramps - also hip pain now too. Was offered the mirena but like you do not want to go that way - I am 48 and feel that this is the end of my road and I just want to have a hysterectomy and be able to close that chapter .... would be interested to know how you are getting on as your post was some time ago ....