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Old 29.07.2019, 20:29
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Re: Question for the ladies - fibroids

Dear 3Wishes, Iím so sorry you are going through this 😔
May I give you a word of advice if you are facing a hysterectomy?
If the doctors give you the possibility to decide and if your ovaries are healthy, then make sure you keep them and that you do not have an oophorectomy as well.
As long as you have your ovaries you wonít experience surgical menopause and your body will continue to produce hormones and react like a woman your age.
I had large crippling uterine fibroids and non-cancerous tumors on the ovaries and I lost my ability to have more children at 36 yrs with a hysterectomy.
I am very very relieved that I put up quite a fuss to keep the ovaries as it allowed my body to function normally until the natural age of menopause.
An oophorectomy too young can be a major change.
Interesting what was said about hormone therapy upthread..... I was forbidden to take any hormones.
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Old 29.07.2019, 21:56
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Re: Question for the ladies - fibroids

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...Contrary to the common narrative, It is not normal for your menstrual cycle to negatively impact your life. It is not normal to feel tired all the time or be in agonising pain on a regular basis. I know we try to grin and bear it and for the most part try to hide what is happening because there is so much social stigma attached. I know people, even women, don't like talking about it but we deserve better...
I agree, and I think even many doctors subscribe to the theory that "some women just have bad cycles". I've believed it my whole life since first having to see a gynae in my teens for terrible cycles.

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3Wishes, many thanks for sharing your story and sorry to hear about what happened after the surgery. Maybe a solution can still be found. If you don't mind me asking, how big is your fibroid now? You mentioned your only options are hysterectomy with bowel resection or medication. Why would you need a bowel resection? Is there some kind of adhesion of the fibroid to your bowels? Also, what was the source of your pain after the surgery? Was it related to the fibroids? Or was it the endomitriosis?
Sorry for the confusion, I ran a couple of things together in the explanation.

At last measure, the larger fibroid was 7 cm x 4 cm. The smaller one I don't remember. However, those numbers were after 6 months of medication to help them shrink. That medicine has been discontinued so I suppose they could be growing again. AFAIK, the fibroids and endometriosis are separate issues. Both combined mean it's no longer realistic or even wise to try and get pregnant.

The possible bowel resection relates to the endometriosis. My internal organs - bladder, uterus, intestines - are all stitched together with it. If we remove the uterus, it's so connected to everything else that it's a very invasive surgery and could result in a lot of complications. I might get some details wrong here but I believe what the doc said is this:

When the hormones surge with a cycle, fibroids grow. If you have endometriosis, the tissues expand putting pressure on the other organs. When that tissue is wrapped around the ureter and bowels, it constricts them. I was sick with fever, vomiting, unable to get out of bed due to the pain, and could not eliminate for days. It wasn't the flu. As the cycle ends, symptoms subside and life returns to normal. I was getting cycles every 21-24 days, meaning I was miserable almost all the time.

Although these issues aren't life-threatening they were/are having a massive impact on my ability to function and go to work. The goal is no longer pregnancy but quality of life. A hysterectomy is too invasive and risky, imo. The medication is 1-2 tablets per day. It basically keeps things at bay as if I am in early pregnancy and I have light cycles with minimal cramping. You can look up the medication. It's called Visanne and from what I saw it's sort of unique to Switzerland.

As for the post-fibroid surgery pain, I initially assumed it was simply from the surgery. Now I think it was a combination of surgery and a hormone surge causing an endometriosis flare-up. Again before that surgery I had been taking hormones to try and shrink the fibroid.

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Dear 3Wishes, Iím so sorry you are going through this 😔
May I give you a word of advice if you are facing a hysterectomy?
If the doctors give you the possibility to decide and if your ovaries are healthy, then make sure you keep them and that you do not have an oophorectomy as well...
Interesting what was said about hormone therapy upthread..... I was forbidden to take any hormones.
Thanks for this. If we end up doing a hysterectomy at some point, as long as the ovaries aren't also totally stitched to everything else we would try to keep them. Of course before any surgery would be planned I'd have scans such as MRI to better determine the full extent of the endometriosis. There's only so much that can be see with ultrasound and palpation.

I've been on a roller coaster of hormones, partly because the original goal was to deal with infertility. Now I'm on just the one and seem to be tolerating it well. If it stays like this until menopause, I can live with it.

Sorry for the long post.
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