Hello to all that reads this...I had surgery last year to remove endometriosis, losing an ovary and fallopian tube. At the time, I was made aware I had endometriosis around the other set.
I have continued to be in severe discomfort, even had a coil fitted to apparently relief this.
Yesterday, I saw a senior constant who reviewed by medical notes to which he has also diagnosed me with adenomysis. Basically options described to me, being a 49year women, tolerate the pain and impact on life until menopause, as this will then stop, or have a hysterectomy. What a choice!
Anyone, had any experience of this that could help me along the way with decision making?!
Thank you 🙂
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Finechina
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Hate to be the bearer of bad news but menopause doesn’t necessarily mean the end of pain or problems. That’s a bit of a fallacy. Don’t bank on that as a fact for yourself and there is no capacity to predict whether this will be the case for you or not.
Not just that but the chaos of menopause can significantly aggravate the Endo and adenomyosis and some Endo can fire up irrespective of being the other side of menopause and post hysterectomy. They aren’t sure of the mechanisms or how to manage it. I’ve found that resources and care in this situation are even worse than for younger sufferers and that’s appallingly.
There is little significant research into this problem nor into the long term consequences of the disease on other physiological processes in the body. For some women it is a blessing but you have to be realistic about the risks. Ensuring you get best care, really good pelvic physio before and after and self care are all crucial in enabling you to try and navigate this situation whatever the short and long term outcomes are.
Stage 4. Its not deeply infiltrating they don't think but its on my bladder, diaphragm, rectum and abdominal wall. I don't have Adenomyosis but I do have fibroids and cysts.
I’m 48 with Adenomyosis and large fibroids. I had a hysterectomy 2 days ago. I read a really good book called The essential guide to hysterectomy by Lauren F Streicher, which was recommended on one of the support forums I visited. It’s very informative, neither pro or against hysterectomy, it just gives all the facts.
For me the decision was very clear, I’ve had a full hysterectomy including ovaries and feel like I’ve taken control of the situation. I’m still sore because it was only 2 days ago, but now I see every day as getting better.
Hope you manage to make the decision that’s right for you.
What severity of endo do you/did you have when you had your lap or as shown on any scans? Was the endometriosis involving your ovary in the form of endometriomas (chocolate cysts)?
It really isn’t as simple as having a hysterectomy as your endo history has a great impact on the consideration. Please be very wary of anyone just advising or suggesting you have a hysterectomy without considering the factors that affect it.
Thank you for replying. It is a difficult decision and still none the wiser!The Senior consultant identified the Adenomyosis from the laparoscopy photos and apparently it was identified in my MRI scan. Although the first time ever mentioned.
I had a 10cms cyst around the right ovary, which the question cancer until it was tested at removal to diagnosis endo.
Apparently the left ovary is showing significant amounts too. I have suffered discomfort around period time for many years however it wasn't until I started HRT that that pain was 24/7. The HRT helped the diagnosis otherwise I would have just put it down it ladies issues, especially with perimenopause.
As a lot of people on this forum, pain over takes your life. So do you have a hysterectomy to solve that or just manage?
Just sharing my experience- I've had 2 laparoscopies and the 2nd time had a full hysterectomy + ovaries removed. I was 49 at that time. It's been 3 years, and I've been really good- been pain free, no more heavy bleeding, etc. After the first surgery, they removed 1 ovary, tubes, removed endo, the endo grew back. I ended up with a 5mm cyst that grew back on the other ovary within 5 months of my first surgery. Given my age and that menopause would be coming soon anyway, I decided on the full hysterectomy and ovary removal. I had a very good surgeon who was able to remove what he could. He said it was like a bomb exploded inside me, the endo was everywhere. The recovery was hard, but I'm glad I went through it to at least be pain free for now. I didn't have bowel involvement. If you get the hysterectomy, you probably want to have ovaries removed otherwise endo will likely grow back w the hormones cycling.
I know it's a very hard decision to make and there are no guarantees. And of course everybody's case/body is different. But I'm so thankful that I'm doing well so far. Feel free to message if you have any questions. Best of luck to you.
I think if you've already lost an ovary and you are OK mentally then I'd be tempted to go for the hysterectomy. I have stage 4 endo and they won't do a hysterectomy as I need a bowel resection and could end up with a permanent stoma bag. The endo may get worse (I know a hysterectomy doesn't always solve it as it continues to grow) and fuse your organs. You could go on zoladex which I'm on - it's often used for pain for endo and could see you into menopause. It would possibly help you into menopause quite quickly as you only have one ovary. Many women thrive after a hysterectomy once they get the hormones right.
I’m 53, post menopausal and on HRT. Had debilitating endometriosis all my life and never offered a hysterectomy. I still have endo pain, chronic fatigue and bleeding and loads of other issues. I thought menopause would solve all my problems and it hasn’t. (Yet) I live in hope.
Thank you for your reply. I feel sadden to hear you are still impacted by endo, it's must be awful. The consultant gives you hope in the menopause. He was a man, so what does he know 🤔😬
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