endometriosis after total hysterectomy :(

It sounds as though you need some good physical therapy. If you're in States or Canada, an OB won't take care of that. You'll need to see your gp or pcp. Meantime, have you tried a heating pad? This is something which may or may not be related, but is important to take care of sooner than later.

Hi Katie I also had a complete hysterectomy 4 years ago and also on my bowel I was told I had 2 options either a hysterectomy or part have part of the bowel removed so I opted for the hysterectomy I thought It would solve the problem and was not told otherwise but for 2 years now every month I'm in complete agony so bad I have to take morphine I'm just so depressed about it all

Hi Katie

I had a total hysterectomy at 27, too. Despite starting on conjugated hrt immediately (and back in '82 it was a high dose), all sorts of stuff started happening. Almost overnight my skin became think and crepey. I still had some pains but they faded over time. It's been a while, but I remember feeling that I was on some fast-forward journey with my body.

Eventually in my 50s we were tapering offthe get and I was down to the lowest dose. Then I started having problems with diarrhea (which had been my first symptoms when endo moved beyond just painful periods when I was 24). Based on my pain, docs were sure it was diverticulitis. I wondered about endo that I still believed it was impossible for it to return. Ha! I had a section of my colon removed and there was b diverticulitis, only endo.

Despite that and despite the hideous upsi-down T on my abdomen, I would do everything the same. Can't say how many times I've been in a grocery store & have stopped to give thanks for not needing to buy all those tampons & pads over the years

I am also thankful to be alive. There is no doubt that I wouldn't have lived past 30 or so if I hadn't demanded the hysterectomy. Cancer would've gotten me, take your pick of uteran, cervical, ovarian &/or breast cancer. Back then they were all quick death sentences. Even now I doubt that I could tolerate newer cancer treatments.

So it's no fun at all having a total hysterectomy at 27, but it probably beats the alternative.

Keeping you in my prayers.

Thank you for your reply. I had my hysterectomy 6 months ago, I think unfortunately I thought it was all going to be great and simple after I had it and I would just take HRT and everything would be fine. I did not realise quite how hard it was to adjust to the HRT, I am on oestrogen only as I have been told that I do not need the progesterone, even though everywhere you look it says if you have endometriosis your doctor may consider combined to prevent reoccuring endo. I have been having some side effects like recurrent vaginal infections, candida and breast issues. I guess I am concerned about the risks for my health of being on HRT for the next 20 years. 

I am very thankful for no more periods, the horrid heavy weighing feeling, the pain, etc but I am not good with the unknown of whats to come!

Fingers crossed my body settles and I can enjoy my time of no periods.

xx

Yes, I thought the same going into mine. I will say that tho I had some episodic pain for a while, not once was it ever again so bad that I curled up on the bare floor trying to chill the pain out of my body.

Back when I was using them here in the States, plain estrogen was referred to as a "conjugated" hormones and estrogen plus progesterone was referred to as a "combined" hormone. It is my understanding that most of worst side effects come from the combined hormones. All hormones do have some association with increased risk of stroke; the risk is much higher for women who smoke, and worse if one takes them into the 40s. I took them anyway and kept smokin' away. (Quit 9 years ago)

Your body has been through a huge upheaval. It's quite possible that your hormones were out of whack before your surgery, and now your body is being asked to function with a synthetic hormone, and it's not exactly what your body had before. It will take time to adjust.

I believe without any science to back me up that many of us go through something very like postpartum depression after our surgical hysterectomies. I went mostly silent for months after mine, and it wasn't because I suddenly couldn't have kids - never wanted them! It was the hormonal upheaval plus what docs sometimes call post-surgical depression. Lasted about 6 months, aggravated by the death of a loved one 3 weeks after my surgery.

Then of course there were the bladder accidents until I learned that different rules applied after the surgery. Surgeons really should warn a girl!

I hope none of this has happened to you. I never tell anyone about this ahead of their surgery because it doesn't all happen to everyone.

Hang in there, and make friends with a good vaginal lubricant. If you use condoms make sure the lubricant is condom friendly. At 31 I had a vaginal tear from missionary-position sex after being without my hormones for 8 months. They had invented a generic estrogen which I knew to be worthless after using it for a few months. Took it off the market shortly after I needed full-on surgery to stop bleeding & fix the tear (my Roman Catholic date gave me last rites in the hospital, in Latin, with me telling him I wasn't near death!).

It's a journey! You're not completely alone even if none of your close friends have been forced down this road.

So u have bn told u had endo again after complain hysterectomy, I really feel like that's what I have again but the doctor said there is less than a 1% chance of getting it bk after hysterectomy but b4 my hysterectomy I had a laproscopy done to get the endo n less than 8 wks it had come bk so bad they had to cut some ligaments out. I found out about having endo at 13 n they wanted to do hysterectomy when I was 16 but I wanted kids n they said I would probably never have any but I still held off n I'm glad I did bc I not only had 1 but 2 beautiful babies.

Hi Heather

I am so happy for you that you were able to have kids, and that you love them.

I was going to say that it's too bad you have a crap doc, but that's not necessarily the case. Perhaps your doc will listen to some of this:

1)maybe it's only a 1% likelihood when thinking of all women on earth, but when you think only of women with endo, it's at least 10% - 25%

2)we have no true history on this disease because it is more prevalent in societies where we ain't birthin' them babies at 13, 14, 15 & 16 so much any more.

3)regardless of the age of childbearing, cancers of the uterus, cervix, ovaries, etc. have been killing women at very young ages from the dawn of time, or at least since "medicine" and "doctors" came into being. So, frankly, who the f#+k really knows the percentages?

4)kindly remind the doctor that as recently as 1981, NONE of the 10 top ob-gyn practices - not doctors but complete group practices - in the States of Texas could diagnose endo. I had to stumble accidentally into a fabulous gastroenterologist to get the stuff diagnosed, and then he had to write very long and explicit instructions to a gyn about doing a lap to confirm. So no doc can ever say to my face that there are definite percentages about this disease. Women have been called hypochondriac s for their abdominal complaints since long before that word was invented. HELLO! We've got a physiological problem, So help us or get out if the way.

Some of this is manifesto-speak, you'll find a much nicer way to say it so we can see if your doc understands the degree of ignorance & myth in med training on this topic. If he does & is willing to learn, there's hope. If not, it is imperative that you find someone else.

I'm with you all the way.

I did have a bad doctor n he let me go as a patient bc I had to go c a urologist bc he thought that's what it was from n got all cleared w that n posted I was glad I didn't have cancer now back to my ob to c if I can get answers or I'll be looking for a new doctor n within 2 days he called my work was yelling so loud I had to hold the phone away n said I was no longer a patient of his n I would have to find another doctor. I go Aug 15 to c a GI specialist n hope maybe they can do something bc I can't take this pain much longer. I've bn up 2 days bc of the pain n trying to take care of my husband who has cancer n then our 4 kids 2 is mine n 2 is his but I just feel like I'm not getting anywhere n didn't realize how many people out there that was dealing w the same thing as me. Thx so much for the response n I look forward to hearing back from you

Heather, you & your husband haven't been dealt an easy hand in the health department. My heart and my prayers go out to you. I hope that you've got someone who can come be with your husband's & kids for a couple of hours at least once a week so you can get some time for yourself.

I urge you to look for an endo specialist. I think seeing a GI is good but I feel you may need an endo specialist if the problem isn't GI. Might as well start try the search now. Your on may be wonderful but s/he may be in the majority of docs who believe endo is killed by full term pregnancies. We have established that you are in that smaller percentage of endo women in whom this cretinous condition persists. There aren't that many endo specialists & it can take a long time to see them. Wouldn't hurt to make an appointment which you could cancel if you found a 100% certainty that your problem was not Endometriosis Strikes Back. (ESB)

I am sending you all sorts of healing thoughts and prayers, for you and your husband.

Thx so much for ur response I will get right on looking for a endo doc. Sorry I didn't get bk to u last night I took my kids to the pool while my husband was sleeping. I don't usually get out of house much other than to go to work n then it's usually bk home but I'm excited or maybe I'm a Lil crazy idk but this Saturday I'm taking all the kids to carowinds by myself lol. How r u doing w ur endo n did u get put on hormone pills after ur surgery, if so how did u do w urs.

No one ever has to apologize for not responding in a forum, or not responding instantly. You're not crazy to be excited that you & the kids got to the pool and have a fun plan for Saturday. It's summer and I am happy that y'all can get out some.

I had my lap in late November '81, total hysterectomy in January '82. I was on hormones for the next 26 yrs - plain estrogen except one year late '80s. By '08 I had tapered down to the least dosage pill available in the States, so little my gp rolled her eyes and said that's nothing, usually used with larger tablet.

Then I started having massive abdominal issues. We all assumed it was diverticulitis & it tested as that. Ha! Endometriosis CAN Strike Back! Zero diverticulitis, 100% endometriosis on end section of my colon. My surgeon was astounded - we all were. My gp same d that the estrogen dose was so low it couldn't happen. But a great end whose job is med research looked it I and found evidence that says in the small percent of women in whom endo comes back after a total hysterectomy, the endo manufactures the hormones it needs.

Disbelief among docs on this small percentage is pretty high. Even after my '08 surgery, my GP kept telling a co-worker of hers that it was impossible for endo to come back in a 42 yr old woman who'd just had her 3d child. When I'd come in for appointments the woman with returning endo would come in the exam room and cry on my shoulder because none of her coworkers believed her.

Endo can come back yet it was completely logical for all of us to believe that I had diverticulitis when I was 54. So you may or may not have ESB. In case you do, it's best to be with a specialist who knows that it can come back.

As to hormones, I haven't taken them since that piece of my colon was removed - well, since the follow up when my surgeon said I had to read the pathologist's report. My gp hadn't wanted me on them so long because of my long history of smoking and the rampant heart problems in my dad & his family. I think longingly of hormones when I have hot flashes but I feel that if endo ever wants to raise it's head again, by golly it will have to do it all on its own. That & I'm in my 60s. And my hot flashes are pretty mild, may even be part of another disorder I have, or it could be the extra 30 lbs I carry, lol.

Here's hoping you & the kids get lots of summer fun even if it's as simple as walking out for an ice cream cone.

Aitarg