Advice

[Bidders15]

I have diagnosed with endo for about 6 years now and battled it longer. I have 2 operations, 1st one was endo removal, 2nd was to remove endo, and endo cyst which turned to be a dermoid cyst, and my right ovary. I am normally only pain free for less than year and then the pain is back. I have another cyst on my left side now. I am in agony and been signed off work for 6 months now. My gynea just keeps saying we will do another scan in 3 months. Previous scans has shown growth. I just want a solution but my gynea doesn't seem interested. Any advice would be welcome.

[Erica448]

Sorry you are going through this I have a small fibroid and still waiting to find out how to stop my period. Literally drained from going back and forth and not been given any concrete answers that give me a solution. I hope you too find some answers.

[ciaotuffy]

Sounds awful. I didn't realize when I had my lap on Oc20 that the cysts could grow back so quickly and aggressively. I felt great for the first 2 mths after surgery, 3mths post op, I was having some cramps, then 5mths out I was in emergency for extreme pain. Turns out I had an endometrioma that grew to 5cm! That's basically 1cm/mth which seems quite large. I consulted my surgeon who said the least he would do is remove the cyst and possibly leave a sliver of my ovary. My previous lap was to remove endometrioma on the other ovary (he left a part of that ovary), remove severe endo and tubes. My other option now, which I'm pretty sure I'm taking, is to just remove everything- uterus, ovaries. I'm almost 50 so while the thought of surgical menopause is scary for me, the thought of needing yet another surgery is also scary. And I don't want to live in pain 5 days every month while this cyst keeps growing. I hope that removing my ovaries will keep the endo at bay. What is your age and what options are you considering right now? Hope you can figure it all out.

[Tessval in reply to ciaotuffy]

Hello I’ve just read your post. I think I may be in same position as you. Had 7cm endo cysts removed from left ovary (and left ovary removed) along with both Fallopian tubes and right ovary detached from uterus wall as it was stuck there thanks to endo. To be honest my recovery was slow and painful and I now have severe stabbing pains in right ovary (the old knife sticking and twisting inside you kind of pain). I also have a very low iron count and am on iron tablets for two months. My last op was in April 2012 and I saw gynaecologist in June and as I was still in pain he said he’d see me in Dec. Due to covid I assume this hasn’t happened so I called today to chase it. I think the pain I have is the same as the pain I had on left side where ovary was taken out but now it’s transferred to right side. I didn’t think endo cysts could form that quickly eg after 9 months but at least I know I’m not going crazy after reading your post. Hope you are feeling better since your last post. Did you get the op? X

[ciaotuffy in reply to Tessval]

Update, yes I did get the hysterectomy + ovaries removed about 7 months ago now. The recovery was a bit more difficult, the surgeon said it was one of the worst cases he'd seen (hard to believe since I had the first lap 7 months prior to that) But I think one of the cysts may have ruptured causing the pain and endo to be everywhere. In any case, I'm glad I went through with it. I was so scared about the side effects from early menopause, recovery time, etc. But things actually went pretty smoothly. I did have hot flashes and night sweats for a few months, but it seems to have calmed down now. (not allowed HRT due to breast cancer) Overall that was pretty manageable compared to the excruciating pain each month. So far so good for now. I know some women have pain come back, even after full hysterectomy so we'll see. fingers crossed that I stay well.

Hope that you are doing ok and can get everything sorted out so that you're not in pain. Feel free to message any questions about my experience.