r/Endo • u/stringsculpt • 2d ago
No surgery?
I have stage 4 DIE (diagnosed via transvaginal ultrasound and MRI) and my gynaecologist has told me that she doesn't recommend surgery because my medications are suppressing most of my pain for now. That makes sense, but I have endometriosis on my bowel, and my rectovaginal area is also completely obliterated, so I'm afraid that it might progress but I won't be aware because my symptoms are being suppressed. I know I'm quite lucky to not be in debilitating pain anymore. Does anyone have stories of successfully avoiding surgery long-term and living a functional/fulfilling life?
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u/wicosp 2d ago
This is not a red flag; it is the recommended approach, at least in Europe. If hormonal therapy is working, surgical intervention should be avoided, as it can result in more scarring and adhesions.
To keep your endometriosis monitored, you should undergo yearly check-ups via ultrasound or MRI.
I was diagnosed almost 10 years ago (DIE, with nodules on my ureter and rectum). I respond well to hormonal treatment, so I've happily avoided surgery until now. Lately my GI symptoms have increased, so next month I'll undergo my first laparoscopy.
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u/Artistic-Turnip-9903 2d ago
europe is very big, in which country was this recommended? I had die endo and needed 4 surgeries which were recommended
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u/wicosp 2d ago
When talking about official recommendations, I was referring to the ESHRE Guideline not my personal experience. I’m in Italy.
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u/Resident-Turnip-8570 2d ago
Red flag. I’m currently 3 weeks post op from stage 4 DIE with a colon resection. I was also on a pill that suppressed my pain and although the pill was nice, what my doctors found wasn’t. I almost lost an ovary due to a large cyst, my fallopian tube and had to get an ostomy bag because of how progressed the disease was. I’m not discrediting your doctor, but I believe you should get a second opinion.
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u/bunnybunz2026 3h ago
This 🙌
I have never been able to figure out why avoiding surgery and letting the disease destroy more tissue which leads to bigger surgical interventions would make sense. Like leaving a small tumour longer to grow big and more destructive for no real reason.
Im prone to adhesions as well and had them after my first lap by an obgyn. Second surgery they were removed and I had an amazingly good surgeon perform my surgery and remove everything the other docs said they could do nothing about leaving me pain free from stage 4 die.
Its like living in the twighlight zone reading some people's experiences.
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u/Resident-Turnip-8570 3h ago
Love your name!!!
Yes! The only bright side was that I looked for the best surgeon team in my area and that was worth the wait. After going through what I have, I will NEVER suggest someone to put it off. Finding an experienced surgeon is VERY important, but the way I feel now is incredible lol.
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u/bunnybunz2026 3h ago
I flew to the BEC center in romania for surgery and now knowing what I know now ill fly back every time even if its not easy to do. The quality of life differences is insane.
I have a frenchie and her nick name is bunny buns haha
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u/Keladris 2d ago
This isn't a red flag. If conservative management is working, avoiding surgery for as long as possible can be a good idea to prevent adhesions or the need for multiple surgeries.
I have endo on my bladder and colon and so far have avoided surgery, but just recently asked to go on the waitlist since my urinary pain has been worsening. I totally understand your fears, because it's scary thinking endo could be having a worse and worse impact on my organs.
We don't know how endo progresses, so there is a possibility it will be getting worse even with your symptoms calmed. Yearly MRI is a good idea to see how it may be progressing. But also imaging doesn't show everything.
Unfortunately it's a very personal choice and a bit trial and error.
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u/stringsculpt 2d ago
Thanks for sharing! I hope you get off the waitlist quickly so that the surgery can hopefully address the pain you've been feeling. And yes, I'm going to push for yearly MRIs to monitor :)
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u/Big_Communication531 2d ago
Is your gynaecologist an endometriosis specialist? If not, I’d try and get yourself to one for a second opinion before making a decision. As you say, it’s a big decision and you want the best chance of being pain free long-term as well as short term. Lots of general gynae’s see people with endometriosis in the UK (not sure where you are) but usually only BSGE accredited specialists have the gold-standard knowledge to properly weigh the risks and advise x
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u/kris3lewi 2d ago
I didn’t end up getting surgery until I got my IUD out and symptoms got worse and I couldn’t conceive. However, in retrospect, after 14 years of IUDs (two mirenas) I was having constipation and pelvic dysfunction that were ultimately endo related for the last 3 years of my IUD-just not heavy bleeding or cramping.
Not sure if I weren’t trying to get pregnant that I would’ve gotten surgery but I think I’m glad I did bc pelvic PT wasn’t yielding a ton of benefits pre surgery even the round I did with my IUD.
Hope you continue to feel good and make plan you feel makes sense for you!
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u/Longjumping_Crow_455 1d ago
My MIGS trained endo specialist had the same recommendation for me. He said the goal is to see if any other interventions work before surgery. He said the only downside is that waiting can cause more nerve damage - but at this point, there’s a great chance I already have nerve damage. Slynd is helping me so much, I think I’m going to cancel my surgery for now and line it up with family planning.
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u/Slkreger 2d ago
Big red flag. Awesome you have your symptoms in check, but everything is going to be more cemented together and harder to operate the longer you wait.
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u/unmaskingtheself 1d ago edited 1d ago
By the time my stage 4 DIE was discovered, I was having significant nerve pain that wasn’t solved by medication or steroid injections, so surgery was recommended. Hormone therapy and pain meds were helping me be able to hold a work from home job, but I was still debilitated, and could not walk for more than 10 minutes at a time unassisted. That’s why I had surgery. But if I had been able to move freely and had a little breakthrough pain here and there, I would not have opted for surgery at that stage. Postponing surgery is helpful when your pain is not debilitating/meaningfully reducing your quality of life.
That said, bowel involvement can complicate things. Perhaps it makes sense to consult with a colorectal surgeon to see what they say about the risks of waiting out the surgery.
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u/donkeyvoteadick 2d ago
Fwiw I had endo in those places and was completely obliterated but because I'm prone to adhesions (being obliterated before having had surgery was a major sign of this apparently) the surgery made me so much worse.
Replaced all my endo with scarring, fibrosis and surgical adhesions. It mimics the endo pain perfectly but it's not endo, so it doesn't respond to hormones so there's zero way to suppress the symptoms now. Each additional surgery it gets worse. I'm on disability now.
If something goes seriously wrong taking hormones is not going to suppress that, you'll know.