I have stage 4 endometriosis and have had 2 surgeries in the last 3 years to remove cysts and fibroids. I currently have multiple fibroids in my uterus lining, one of which is showing cystic changes (from the last MRI). I also have bowel complications, as my damaged fallopian tubes are stuck to my colon, and a lot of scar tissue. I am getting conflicting information fro a OB/GYNO doctor and the surgeon (who performed my first surgery). The doctor is recommending that I inquire into a radical hysterectomy, as my symptoms are only going to get worse and I am currently fortunate to be in a position with very good private healthcare. The surgeon is recommending that i do not, as I 'will age 6 years overnight and I could end up with other complications such as bowel problems, anxiety/depression, and the endometriosis may not be resolves as it could continue to grow, especially if I need HRT.
I am 43 years old and fortunate enough that I get very little pain/symptoms from the endometriosis. The worst being sharp pain during my menstrual cycle and quite severe constipation.
I am currently taking Marvelon contraceptive pill for 2 months at a time, which is helping, and i have radically changed my diet.
Any advice, tips, suggestions would be MOST appreciated.
Written by
endomeBecky
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I am having a hysterectomy + BSO with bowel excision/resection and bladder excision/resection on Friday. It's been a long road and a difficult decision, but by the time I was diagnosed I'd had the disease a very long time and it was advanced. My pain is unbearable and none of the hormone treatments have really worked. My sex life has been destroyed, my mental health is suffering, I'm not really able to work. I'm exhausted and I'm ready to move on to the next stage of my life.
My BSGE surgeon has basically said that I have two options - either have the surgery, which has a good chance of offering me better quality of life, or carry on as I am, cycling through the drug treatments and hoping that the bowel disease doesn't get worse. The pain I experience during my periods is just terrifying and it's gone beyond a level I feel I can cope with.
I've been told I will have to take HRT until I am 50 (I am 39) but that once the disease has been thoroughly excised, the chance of it returning is small, especially as I will be having my ovaries removed.
The important thing is to get a second opinion and make sure you're seeing a specialist from the bsge list.
able to go to the toilet both ways completely normal.
Best of luck - please embrace don't shy away from it.
I am 5 months post op - 2 and a half stones lighter, look 10 years younger and do all the physical activities I couldn't do for 10 years when in extreme pain.
I have had radical excision surgery & also my uterus removed nearly 4 months ago.
I think your surgeon is advising not to remove your ovaries as they play a very important role in your body. Could they remove everything else & leave your ovaries?
Hi, thanks for your response. The doctor is suggesting I get everything removed (radical hysterectomy) as my last 2 surgeries were for the removal of cysts on my ovaries. These seem to have been less of a problem since I have been on the pill, but now I have more fibroids, one of which is showing cystic changes.
How are you feeling after your surgery? Are you having HRT??
Thanks Lindle. I really appreciate you getting back to me.
The doctor (who is from the UK) suggested a hysterectomy because he thinks it will be eventually be the end route. Rather than having lots of minor surgeries over the next 7-10 years. He was also not keen on me continuing to take the contraceptive pill (Marvelon) until I get my menopause.
I am currently living/working overseas(in the middle East) and plan to do so for the next 3-4 years and we have VERY good medical cover. He suggested returning to the UK for surgery, as I would need more expertise than what is offered here, and I could go private. Meaning better care (??) and paid sick leave from work for the surgery and recovery.
My pain is bearable at the moment, and recent diet changes have really helped with bowel issues. However, I have multiple fibroids in my uterus lining, one of which has some cystic changes. My fallopian tube is stuck to my colon, and my other fallopian tube is filled with a liquid (hydrosalpinx), although the MRI did not detect this, only the ultrasound scan. Scar tissue is also an issue, he seems to think, as my pelvis/abdomen is always very rigid.
I know it is a HUGE decision but at least I have time to consider my options.
I know what I am dealing with at the moment. The pill is stopping the regrowth of cysts but increasing the fibroids. It is also feeding the endometriosis but my periods are bearable and less pain. I worry there is ongoing damage happening to my insides, and the fact that if I did need some kind of emergency surgery, it could be dangerous where I am living (as surgeons not experts in these more complex hysterectomies).
I know a hysterectomy is not 100% effective at removing the endometriosis, and that it can reoccur, especially with HRT. And that I could have lots of other issues (bowel, brittle bones,depression/anxiety etc.)
I am not sure if it is worth the risk. But again, I have no idea what the risks are if I do not have the surgery and more damage keeps occurring and possible surgeries with non-expert surgeons.
my BSGE surgeon recommended having the more drastic surgery now rather than waiting as he said that any minor surgeries carried out in the meantime would cause scar tissue that could leave me unable to have a hysterectomy when I (in his opinion) will inevitably need one for the adenomyosis. He has advised removal of ovaries as it has been shown to reduce the need for reoperation - the percentage of women who need further surgeries when they are left in seems to be 50% and sometimes higher, depending what you read, and he said that they would not want to risk more surgery to my bowel as my RV nodule is large (3.5 x 2.5 cm) so it will cause quite a lot of scarring when it is removed. I have a hydrosalpinx in my right tube, an endometrioma on my left ovary, kissing ovaries, bladder endo, and I also have several fibroids.
Leaving the disease and doing nothing - they have warned me I could face emergency surgery, a permanent colostomy, and kidney damage (as I have a patch growing close to my left ureter and up towards the kidney).
I had a total abdominal hysterectomy and both ovaries out in Feb 2015. Sounds like I was similar to you as very heavy periods due to fibroids but minimal pain. I had it done privately and am now in worst pain as endo wasn't excised at the same time.
I'd say have it but ensure it is a bsge clinic surgeon who does private work so you are getting the best care and treatment as the will do the excision at the same time. Or they should 😊
I'm on hrt and it really helps with hot flushes and mental health. I don't think it affects endo. I'm on a combined one as my bsge surgeon, who is also head of menopause clinic, tells me you need a combined one if your are an endo sufferer. I'm on Kliovance. Kliofem and evorel conti patches are all ok too.
Good luck as it's not an easy decision and I hope I've given you info and you don't feel I'm telling you what to do.
My parents live in Oxford and I have been looking at maybe getting a referral to Natalie Price, The Manor Hospital, Beech Road, Headington, Oxford. She is highly recommended. I will need to see if my doctor here can refer me, as I am currently a non-resident as working/living overseas.
I think getting more scans and a diagnostic lap in the UK would be the best approach. Then I can make a fully informed decision.
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