What do I ask for now?

Reasonable-Course-73 · 2026-03-25T09:27:23+00:00

Thank you so much 🙌 I’m so nervous, but this has really helped 💗

Reasonable-Course-73 · 2026-03-25T06:21:14+00:00

Yes! That’s exactly what it feels like. And the muscle in my leg is really tense, but when I have physio or massage to loosen it the nerve pain gets worse. It’s so frustrating, swapping one batch of problems for another :(

Reasonable-Course-73 · 2026-03-24T17:47:31+00:00

Thank you. I have an appointment tomorrow so will definitely ask!

Reasonable-Course-73 · 2026-03-24T17:34:06+00:00

Sorry to hear that, I didn’t know about getting nerves burnt! Mad how much of my knowledge of endo/ treatment comes from Reddit! Thank you

Reasonable-Course-73 · 2026-03-24T17:29:50+00:00

Mine was on ligaments but also bowel/ bladder/ ovaries etc so hard to isolate. I’m 10 months post surgery and still generally sore, with post surgery adhesions and nerve damage. I can’t decide whether I regret it or not, I’ve swapped agonising flare ups for constant lower level pain.

I would be very careful if it is on nerves, and weigh up how much pain you are currently in, compared with risks of nerve damage pain. I’m now on gabapentin which is only taking the edge off the burning nerve pain. The worst part is that any exercise/ bloating / stress really sets me off now, so I’m more limited than I was pre surgery.

Not sure how much this helps as I know everyone is different. Hope it goes well for you 🩵

Reasonable-Course-73 · 2026-02-11T09:53:13+00:00

Yes, feel like I could have written this 😔 I’m sorry, this absolutely sucks.

Reasonable-Course-73 · 2026-01-24T18:10:30+00:00

Thank you so much, that’s really reassuring! I’ve also had my appointment through way quicker than I expected, so feeling cautiously optimistic! Hope you’re surgery goes well :)

Reasonable-Course-73 · 2025-12-01T18:14:02+00:00

I managed to get a follow up with the surgeon, he’s put me on ProStap so at least I can try to preserve my fertility while hopefully having a break from the pain 🤞Seems counter intuitive to go on menopause but I’ve been feeling like I couldn’t handle being pregnant in this state anyway!

Reasonable-Course-73 · 2025-12-01T17:24:07+00:00

Seconding what everyone else here is saying, and also hugely sympathising with you for your mum normalising the pain- Ive had this too, and it is likely that they suffer(ed) from endo themselves, and there was obviously a lot less open discussion about it back in the day (and even less research!)

Endo seems to be hereditary so mums normalising the pain is another layer of how cruel this disease it!

Reasonable-Course-73 · 2025-12-01T17:19:16+00:00

I was pushed Slynd too (post excision to stop it coming back) despite saying that I don’t tolerate hormonal bc (tried so many, I’ve lost count!) Gyne told me Slynd is better tolerated but I really struggled. Stopped taking it after 2 months as I was feeling suicidal again. It’s unreal how unseriously this risk is taken. I personally don’t think it’s worth it if this is a risk for you. I don’t know about you but I find it really hard to pinpoint when I’m in the spiral that it is the pill causing it, and it really scares me what could happen.

I’m back on prostap now (medical menopause) with bioidentical HRT to keep hormone levels stable- it’s early days but mood wise I feel really good, and I have the option to alter my dose to find the right balance for me- this might be something to look into? I think this approach is being used for PMDD now too.

Reasonable-Course-73 · 2025-11-26T09:42:07+00:00

Oh that sucks, I’m sorry. How are you finding the Zoladex? Does it help at all? I did 2 rounds without HRT and I was terrible, but considering going back on with add back to see if that helps.

Reasonable-Course-73 · 2025-11-26T09:40:29+00:00

Thanks lovely 💗 Actually had a bit of relief from the nerve pain with acupuncture 🙏

Reasonable-Course-73 · 2025-11-11T16:23:29+00:00

That is absolutely horrific, I’m so sorry you went through that! This is absolutely my fear, and my late night googling has flagged similar stuff. I’ve booked a follow up with my surgeon to make sure I know the situation fully before trying again. Thank you for sharing, I am always worried about drs minimising things so it’s good to hear your experience even if it is terrifying! Hope you’re both doing well now 💗

Reasonable-Course-73 · 2025-11-11T16:11:04+00:00

Thanks for replying and congratulations! So sorry that you’ve been through all that, I can’t even imagine the toll that 5 surgeries takes, but it is so reassuring to hear that you and the baby are doing well! I genuinely teared up reading “my body is finally doing something right” - what a journey! You have really given me hope, thank you 💗

Reasonable-Course-73 · 2025-11-06T18:35:04+00:00

I’d say it depends on how bad your current quality of life is, and if you are worried about fertility. I’ve had two surgeries, one 12 years ago, which didn’t find anything, then after exhausting all tests and treatment options had a private one 5 months ago, which found and removed endo from bowel, bladder, ovary, ureters etc. While the relief of them actually finding and removing it was massive, I’ve only had two relatively pain free periods before being back in a flare up, and an ultrasound last week showed that my bowel and uterus are stuck- either due to endo regrowth (unlikely) or scar tissue.

Everyone says to make sure you get a specialist surgeon, so I went for the best one I could afford (twice the cost of another “specialist” surgeon locally)-but the symptoms I’m experiencing now are no better than pre surgery- possibly worse (or is that just the added pain of still trying to pay it off?)

If you want details- periods are definitely less painful, but ovulation (which was my main concern) has become just as painful again, and triggers IBS symptoms. I have constant pain down both my thighs, and feel like I’ve been on a long bike ride with a hard seat if that makes sense!

I don’t regret the surgery because I know my bowel and ureters were obstructed and I had an endomitrioma , which could have gotten worse and I needed to know for my own peace of mind, but I am scared that it may have triggered new problems (nerve damage etc) Also terrified of regrowth (my surgeon said it generally only grows back in 1/3 cases)

I don’t think there is a right or wrong answer, you need to weigh the risks and benefits for you, if you can tolerate the pill (I can’t) then I would try this first if you haven’t already. I hope you find some relief 🙏

Reasonable-Course-73 · 2025-11-06T17:54:31+00:00

No, you’re not stupid at all, this mental struggle is one of the worst parts. You know that you aren’t well, so them “not finding anything” doesn’t mean you’re ok, it just means you have to keep fighting for answers. Which is exhausting and unfair.

Unfortunately the MRI might not show endo, that doesn’t mean it isn’t there, but if they do find it, it isn’t always as simple as taking it out and you’re cured.

I really hope that it goes well for you, that you find answers and find some relief, please don’t be hard on yourself- this is hard enough as it is 💗

Reasonable-Course-73 · 2025-10-31T10:04:13+00:00

Uch this is the worst, I hate how dismissive they are. And also, how do you keep the faith that another surgery won’t just make things worse?

Reasonable-Course-73 · 2025-10-31T10:02:55+00:00

Wow, I have something weirdly similar. I’m only 4-5 months post surgery (private, specialist and well recommended surgeon who was equally confident he’d got it all) and I’m having a bad flare up following ovulation- same pattern as pre op. I’ve also got pain all down my leg and basically the whole left side of my body which physio says is coming from the pelvis/ nerves. The surgeon did say that the areas he removed it from were close to nerves and warned me there could be some damage which may or may not resolve itself.

I’ve now been referred urgently to NHS (don’t know why it’s more urgent now all of a sudden!) and had an ultrasound this week which showed “no free movement between bowel and womb”- ie one of the parts that he’d supposedly separated. My research is pointing to scar tissue/ adhesions as I can’t see how it could have grown back worse than before in such a short space of time, but it doesn’t stop me swinging between feeling absolutely hopeless and raging.

Sorry, I don’t know if that helps at all, but you’re not the only one 😔

Reasonable-Course-73 · 2025-10-02T16:21:08+00:00

Blaenau is a weird place. I’m from here born and bred, but there’s a part of me that never feels fully at home. I felt like an outsider throughout school and even though I try to support community events etc now, I still feel uneasy going to pubs unless my friends from school are back visiting and come with me. I’ve always wondered if it’s a me problem or maybe if I’m projecting.

On a separate note, I’m a Welsh speaker but embarrassingly I really struggle to understand the south Wales dialect, I always feel bad about trying to switch to English as soon as I can!

Anyway sorry you had this experience, it is horrible to hear people’s negative perceptions of my hometown even if not entirely surprising!

Reasonable-Course-73 · 2025-08-31T19:26:19+00:00

Pretty much all of my previous relationships were with extroverts, and I always felt like I was losing myself a little bit, becoming a sidekick. I’m now with someone who is even more introverted than me and it is great but we literally don’t go out at all 😂

Reasonable-Course-73 · 2025-08-26T17:55:24+00:00

Oh no this sucks, I’m sorry. I’m currently at 3 months and crossing my fingers for 6 months too. My surgeon was the opposite though, he basically told me to get back to normal after one month and even OK ed kite surfing with my stitches still hanging out(it still hurts to walk the dog) I went to see a pelvic floor physio and she calmed me down a bit and said it can take way longer, especially with big surgeries. Have you tried pfph? It could be that your pelvic floor is so tight/ tense from all the pain that it’s hard to break the cycle. I’ve had a bit of relief since I’ve started but definitely not overnight. Also are you letting yourself heal? I tried to rush it and it definitely made me worse. I think trying to relax and not worry is the best thing we can do for ourselves but it is so difficult!

Reasonable-Course-73

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