endometriosis after total hysterectomy :(
Posted , 79 users are following.
hi everyone, i had a total hysterectomy in june 2010 due to endometriosis. i was put on climavil hrt patches after which caused headaches and pains and i was then changed to livial approx a year ago but for the last 2 to 3 months i have started to experience the abdom pains, back pains, leg aches, exhaustion, joint pains and bloating etc that i had before my hysterectomy. its not as bad but its still bad enough to cause problems to my everyday life and routine especially with my 4 year old daughter here. please could anyone recommend any other hrt or treatment for hysterectomy after endometriosis? i am now taking my cocodamol and voltoral tablets for the pain that i was on before my op!! thanks, nina.(aged 26, west sussex) 
4 likes, 118 replies
melisa1230 neene
Posted
Hello all! I to have been battling endo for over 25 years now. Infertility treatment for 6 years.. Finally adopted our beautiful son in 2000, so I guess I can thank endo for him. I had a super cervical hysto at the age of 34 with leaving 1 ovary. I was pain free for 11 years until this past year with lots of menopausal symptoms. Went for a cat scan because of urinary problems and they found a endometrioma, a hemoragic cyst & simple cyst on my only ovary. I went back to my doctor that did my original hysto 11 years ago (3 hours away but worth the trip) He specializes in Endo! I'm 2 weeks post op. He removed my last ovary, which he said was so swollen it couldn't have possibly been working. He removed my appendix which had endo on it, cleaned up my abdomen & removed endo that was growing around my ureter. He said if we didn't catch it now it would have strangled my ureter and I would have required a bladder reconstruction. Thank God we got it in time!! I've been using Premarin cream inserted vaginally for dryness & irritation that I was experiencing prior to surgery. He also ordered a oral Premarin to be taken if I feel I need it. He said there's no way my only ovary could have been fuctioning because it was so damaged & swollen. He things I will be just fine without the HRT because I wasn't having bad menopausal symptoms prior to the surgery. I thing he did mention was how thin my vaginal skin was & that is why he prescribed the Premarin vaginal cream for the thinness, irritation & dryness. I did slightly tear with intercourse prior to the surgery... I'm still tempted to take the HRT fir the 1 st year because I'm already experiencing mood swings 2 weeks post op. I will discuss that with my Dr at our follow up visit. I'm not sure if we can mention Drs names on here but my dr is awesome!! A miracle worker with women suffering with endo!! His name is Dr Harkins & works at Hershey Medical Center in Hershey, PA. Oh & btw he said there's no data that suggests HRT treatment attributes to the regrowth of endo after a full hysterectomy.
shelley38238 neene
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I had a complete hysterectomy in 2013 I on occasion get cramping in my pelvic area and back like you I have tried estrogen but I gained to much weight I now use a vaginal Premarin cream but I am getting more hot flashes and mood swings I went to cvs and bought some estroven weight control and I'm trying that I hope it helps ? I didn't get any sleep last night due to fatigue and cramps.
fatima1985 neene
Posted
Hello, my name is Fatima. Ive been going through this since I was 23 (2009) maybe before that who knows. I had no problems like this after inhad my oldest 2 but after I had my 3rd child in March 2009 the pain started it was light, it wasn't as bad as it is now after I had my last child in 2013. The pain was sever, my periods started getting heavier and lasting longer, like up to almost 3 wks long. My lower back started hurting, my legs, my joints and I was getting this throbbing stabbing type of pain in my lower abdomen on the right side.
It has gotten to the point that I couldn't get out of bed, my significant other works during the day so sometimes my little ones will miss school it has gotten to the point where I will have to wear Depends diapers and it's really stressing me out.
A little while after I had my son in January 2013 I couldn't take it anymore, so I started to talk to my GYN doctor about it and he told me to talk to my medical doctor to talk to them about it. They did a sonogram they didn't see much they said they saw a little cyst on my right ovary but it wasnt causing the pain. Then they've talked and said maybe it could be endometriosis.
In the summer of 2014 they talked about a shot called Lupron that I will be taking once a month, it will make the pain go away as well as my period, which would make me go into early menopause, it did just that and I was ok with that at the age of 28. They stopped giving it to me around march of 2015 because they said that it can make my bones deteriorate, they did a bone density test and everything came out fine. Now it's really bad the pain is really unbearable it makes me want to pull my hair out sometimes. Since April 2016 I've moved Upstate New York and I've been seeing a new doctor and I've been telling them my situation and they're telling me about surgery about having a partial hysterectomy taking out my uterus my tubes but leaving my ovaries. I truly don't understand what to do anymore, I'm reading you ladies stories and I am terrified of what I should do I'm 31 I have 4 Kids, I'm not having anymore but I do not want to go through anymore of this stress it's really driving me crazy. I can't sleep, I'm not happy depressed. I can't work I can't do nothing I can't even play with my kids most of the time and this pain has to go I want my life back... But please someone please give me some type of advice. I supposed to have the surgery in early January 2017 and I'm thinking about changing my mind.
aitarg35939 fatima1985
Posted
Hi Fatima
You are having a very rough go with this, and on top of that you've got a hard decision. Unfortunately we all have different experiences so nothing and no one can accurately predict what will happen for you.
I had a total hysterectomy at 27 and it got me my life back. I had some pain after the surgery which eventually subsided. The oddest pain was whereI my left ovary had hurt for so long. Nowadays I'd suggest acupuncture for a pain like that one simply because it has helped me with other post-surgical pains.
If you want the hysterectomy, think long and hard about keeping those ovaries because the one near certainty in this is that in a few years the docs will want to go back in & remove them. The docs will sound so reasonable when they say that you can keep your own hormones as longas possible - yes, and you'll be keeping the risk of ovarian cancer, too.
If you should have a total hysterectomy and go on HRT, it will take about 6 months for your hormones to settle. So none of it will be easy, but compare this to your current situation and imagine another years as you are.
You've no idea how much I wish I had more cheerful news for you.
kristina2016 neene
Posted
Hi,
I had a complete hysterectomy at 23 for endo and I am 38 yrs old now. I started having the same pains your explaining almost a month ago and I to was checked for all the same things. One night it got so bad that I could barely move and my fiance took me to the ER. The doctor came in and asked me where it hurt and the only explanation I could give was were my right ovary SHOULD be. He then asked what caused me to have a hysterectomy at such a young age. I explained to hime it because of endo that had already started causing my pap smears to come back as pre-cancer. He told me even though it's had been 15 years I still could have endo and the only definitive way to know for sure was to have an exploratory surgery. He also told me that if I did that and it was endo they would more then likely take scraping of the liesions to make sure it hadn't turned into cancer. I was also told that it could be wrapped in my scar tissue from surgery. I'm in the process now looking for a specialist that has a decent amount of experience dealing with endo so I can see where to go from there. I wish you the best of luck and maybe what I was told could help you in your quest for relief!
aitarg35939 kristina2016
Posted
Hi Kristina
I'm so sorry you may have ESB, Endometriosis Strikes Back. So hope everything goes well and nix on the cancer.
But to be clear for Fatima & Laura: do you feel like you had a better life for 14 - 15 years?
I feel very fortunate for all the good years. Really, but feel fortunate to be 62 and I owe the years since 27 to that hysterectomy for I would've died from cancer before age 33.
kristina2016 aitarg35939
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I am very thankful to have had 15 years being pain free. Yes when I was talking to the doctor it did upset me because at first I felt like I had been lied to and given an empty promise. I mean 23 yrs old was very young to have a radical hysterectomy BUT I had 2 young boys that needed me here happy and healthy! Homestly I never even thought endo because I didn't have any female organs and I was under the impression that they got it all when they did my surgery. If I would have known it could come.back regardless of what I did then yes I prob would've put the surgery off. But like I said I have zero regrets of living the past 15 yrs without any pain or problems.
I do have 1 question though........If my smears were all coming back showing signs of early cancer I mean it's been 15 yrs so if it was still there wouldn't I have noticed that by now? I guess I'm just stressed and and already tired of living with this pain. I truly don't remember it hurting like this before but at lease I've got a direction to go in!
aitarg35939 kristina2016
Posted
Hi Kristina
Given that even today 90% of GPS in the States and 50% or more of our OB/GYNs don't know or refuse to believe that endo can come back after pregnancy, much less after the radical hysterectomies you & I had, it isn't in the lead surprising that they didn't know this 15 years ago (35 years for me).
When we had our hysterectomies, the cancerous & near-cancerous organs were removedmoved
aitarg35939
Posted
Sorry ,,,
The cancerous organs were removed. While endo seems able to manufacture itself from nothing (not exactly), it cannot re-manufacture our surgically removed uterus, tubes, ovaries and cervix IF we have them completely removed. So we are then spared the possibility of those forms of especially murderous cancer. (And since removing the uterus can deter or delay breast cancer, we get a little perk there.) For both of us, cancer in a repro organ most assuredly would've done us in a long time ago.
If a woman chooses to have just her uterus removed, or everything but one or both ovaries, she needs to FULLY understand the risk she runs by keeping repro organs, the worst of which is terrible cancer. Most docs are not going to say that. Nor will they mention that if ovaries aren't functioning properly, endo doesn't care. It will still happily grow there in those of us blessed with the most vile form of the disease - at least as I understand it.
In folks like us where it comes back on other organs, it has had to work hard all those years to get there. Can those spots then become cancerous? I don't know. It was such a shock & surprise to my general surgeon that the pathologist's report said endo instead of diverticulitis. The man is probably 55. He & his partners do abdominal surgeries all day, every day. Neither experience nor training prepared them for that. Having avoided OB/GYNs like the plague for 20 years, I was surprised, too, though reality tells me that the chance of me having met a doc who would've known about ESB are zilch.
So very little blood s known about this disease. 100 years ago, women with endo probably mostly died between ages 25 - 35, or at least those with the vile form where it comes back even after pregnancy. Here in the Western US, I'm sure that many of us were murdered by our spouses because our screaming pain drove the husbands crazy, or they were just angry because we couldn't fulfill our wifely duties of sex on demand, gardening an acre of land raising the kids (if we could have them), tending wood cooking fires ALL damn day, boiling the water to wash the clothes, making the soap, milking the cow, feeding the chickens & pigs ,,, can you imagine that with the nightmare of full-on endo without any pain meds, without any birth control pills? (Which is still how some of our sisters live in certain parts of the world today!) Heck, many of our endo sisters through the ages must have taken their own lives in order to end the pain.
All of that is to say that science/medicine knows very little about endo because they haven't been studying it all that long. The words "hysterical" and "hysteria" were invented for us! Insanity of the uterus sure described me in my 20s when I would lie down & roll around on the linoleum floor as a means to chill some of the agony out of my body during our 11.5 months of summer.
Any doc who says he can guarantee a particular result for one of us is , at best, a pompous blowhard. I would have my total hysterectomy again, knowing what I know, having skin that aged 30 years within 6 months of the surgery (despite HRT), and knowing it would come back in 27 years. It worked very well for me AND saved me an early horrid death from cancer.
But no one can guarantee that for anyone else.
Apologies for the long soapbox, y'all.
Chinadoll1968 neene
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elizabeth78285 neene
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Neene. Hi. I went thru a total hysterectomy at 30 & I was miserable for years. I came upon bioidentical hormones. They are made at a compounding pharmacy to match the exact hormones in your body. First go to your medical Dr & ask him to check your hormone levels. Mine were barely existant. He referred me to a urologist office who has specialist on hormones. Wrote me prescriptions for estrogen, progesterone & a very light dose of testerone to keep my bones strong & energy level up. After a few days I felt so much better. I began to lose access fat, my skin looked better & I felt like a new person. Please research this...it will change your life. I definitely would never want to be without them. If you have any questions please let me know. My mom had breast cancer 3x so I can't take the ones from a regular pharmacy. Those are what gave Mom Breast cancer. Happy Valentine's day & I hope this info helps.
Elizabeth
aitarg35939 elizabeth78285
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How I wish they'd had bioidentric back when I had a total hysterectomy at 27! Little late now. Not enough money to get me to touch that vocal Trump supporter's site.
chezanddes69923 neene
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aitarg35939 chezanddes69923
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You're right, you shouldn't have been brought within a mile of them as a known PE patient. I stayed on them while smoking cigs because without them, I was near-psychotic. Friends noticed vast personality differences on/off. But I was on tablets and no matter what docs say, our systems are sensitive enough to react differently to different delivery. I couldn't have done patches due to adhesive allergy.
lisa16541 neene
Posted
Hello everyone else on here going through utter hell too..
My name is Lisa and I turned 52 mid March. I'm going to write pointers about how my Endo came to be
. Had problems since 14
.Chronic, heavy periods
.3 Lapyroscopies by time I was 19...DX with Bilateral Endo
.Backache started at 20
.Pain and fainting everywhere...even in class as a Teacher
.Met my husband at 20...married at 27, told we could not have children.
.Endured severe pain, had many scans, ultrasounds, hospitalization
.Was offered six months of Zoladex injections through the naval.
.Miraculously pregnant shortly afterwards
. Horrendous pregnancy with many Hospitalisations throughout, but Endo pain
gone!
. Had a gorgeous baby boy in 1995
.Emergency Hysterectomy 1996 the week I was 30 due to pain
.DX with Fibromyalgia and MS 2005, had to retire from my Teaching Career I'd worked so hard for and loved.
.Referred back to a Gynae who told me nothing he could give me, as Gynae who operated Had left one tiny fraction of ovary. HRT would stimulate Endo.
.Had severe stomach and back pains treated with morphine.
.Last year hospitalised twice with CT and ultrasound
.Today results indicated 2 nodules in my pelvic area... Back to Gynae for more tests.....DOES IT EVER STOP???
IVE CRIED HALF MY LIFE AWAY ...AND IM SO POSITIVE...JUST AWFUL
Be well ladies...had to get it off my chest sorry, its draining me..but I keep S'Myelin
Lisa ??