I'm new here after being diagnosed with stage 4 endometriosis via laproscopy at the end of February 2025.
It's been a long and painful journey in every sense. It's taken 17 years to get in front of a consultant who took my pain seriously enough to investigate but even then, he informed me it was a strong possibility they would find no endometriosis during the procedure.
However, when I woke I was told I had stage 4 endometriosis on my ovaries, fallopian tubes, ureter, uterus and bladder.
I was also told I needed a referral to the specialist endometriosis centre in Cambridge for the excision as it was too complex for surgeons to remove during the diagnostic procedure.
I was advised to speak to my GP regarding pain management and hormonal treatment in the time between now and my visit to the centre. With regard to hormonal treatment I was advised to consider GnRH (Gonadotropin-Releasing Hormone) treatment.
Aside from feeling shocked, saddened and let down that it had taken so long for a diagnosis, I was also at a loss at what to do next. I felt I had just been landed with a diagnosis and provided no further information or support and now I'm just expected to steer my own treatment? I don't know the first thing about endometriosis and am feeling completely overwhelmed by the scale of the task.
Pain management has been a challenge for me over the past 17 years. As a sufferer of chronic migraine as well, I am unable to take many of the suggested treatments (Codeine, Meptazinol, etc.) I have tried Mefenamic Acid and found no real benefit. I finally found that Naproxen seemed to take the edge of, but it also took the lining off my stomach 😂 - so I've been advised to stop taking that.
I'm now extremely anxious that I'm approaching my next period with no effective pain relief other than a TENS machine, paracetamol and a (?helpful) suggestion to try 'meditating'.
I have done some research but am still unsure of the best path to take.
Any advice you can give will be gratefully received. To be honest, just to connect with others that are going through/have been through similar would be amazing.
Thank you for reading to the end of such a long post.
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zdl123
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next steps, treatment etc us different for everyone
For me the combined pill help reduced ALOT of the pain. No periods, left to manage mostly of bowel/ibs pain. I opted not to have any surgery for now and see how i go on
Recommend reading ‘heal endo’ learnt alot about the disease from it
Do u have u good gynea/consultant to talk options with?
Its finding what works for you to reduce /manage pain- medication, exercise, sleep, reduce stress, food- 360 approach to looking after yourself
17 years is a particularly long time, I'm sorry it's taken that long but I admire your perseverance. I think we're all on different paths to be honest, and what works for someone else might not work for you, so it's down to trial and error sometimes as to the treatments we have. For me it took trying three different contraceptive pills before I settled on one. They say it takes a few months for side effects to calm down, but it took around a year for me. It's just something you have to weigh up, but like Bondi64 having far fewer periods has done me the world of good and I mostly deal with gastrointestinal symptoms now.
A lot of people (including me) have found an anti-inflammatory diet quite useful (for inflammation in general not just gut issues). Again, it takes some trial and error to find out what causes inflammation for you. Things like red meat, alcohol, coffee, dairy etc. are common triggers. Keeping a food and symptom diary might help with finding trends, there are apps you can use or Endo UK has a PDF: endometriosis-uk.org/visiti...
The page is on about getting a diagnosis - I know you already have one but the symptom diary might be useful for you just to get to know what's happening with your body.
If you are taking any meds before your next period and you have a rough idea of when it will start, I find it really helpful to start taking my meds 2-3 days beforehand - it's much more effective!
The NICE guidelines might be useful if you haven't come across them already: nice.org.uk/guidance/ng73They provide guidance on the recommended treatment pathways. It is mostly pain killers and hormonal treatments aside from surgery. I've heard that it can sometimes help to relax your pelvic floor muscles as well - I think there are exercises for that but I'm not sure what they are.
Thank you so much. Lots of really helpful info. I hadn't thought about keeping a food diary but definitely will start one, especially as I feel I have almost exhausted my options for hormonal contraceptive treatment and most pain relief too. The NICE guidance is also incredibly useful so thank you again.
Hi, are you on Facebook? If you are, try searching for Nancy’s Nook Endometriosis. It has been very helpful, and the page includes specialists and patients like me who have endometriosis. They also have great resources.
I would also like to encourage you to speak to the trained volunteers at Endometriosis UK.
I had stage 4 endometriosis due to a couple of endometriomas found on my left side. I was lucky to find a private endometriosis specialist before the fertility gynecologist decided to operate on me through the NHS. When I had my laparoscopy last year, he removed all the endometriosis from my uterus and rectum. There was a lot, and it was quite extensive.
However, I haven’t fully recovered from the pain. I’ve started having migraines again, along with moderate to severe period pain. I’m still using TENS and taking dihydrocodeine for pain relief.
I think it’s because endometriosis is a chronic condition. I’m also frustrated, but I now know how to ask for help and support.
Thank you so much for your response. I sympathise completely with your pain on the migraine front too! (as well as the period and endo pain) For me, it has been difficult to find adequate relief for endo pain that doesn't trigger a full blown migraine attack.
I am on Facebook so I'll have a look at that page (thank you). I had seen that Endometriosis UK offer a chat service but keep forgetting it is only accessible at certain times depending on which day, so I just need to make a note and remember!
It's definitely a frustrating process and after 17 years of waiting for a diagnosis, I feel like I'm now just starting the really hard work.
Always here if you want to chat ☺️ best of luck with everything
So…the analogue injections stop your periods, giving you some pain relief. There are nerve blockers called amitriptalyne. You have pain options. So please don’t think you don’t but getting the right things in place can take ages.
Ask GP to expedite appointment to Endo Specialist. Ask for amitriptalyne. Pain Management referral. Ask for a Medical Psychologist to help with pain Management. Mine helped me soooo much! (Been diagnosed 18 years now).
The meditation sounds insulting but it does help. Head Space or the Calm app’s I can recommend. It distracts your brain from the pain and breath work can really ease the anxiety. The pain will maybe still be there but we have to sometimes navigate around it with other stuff. Meds and meditation are really helpful. If used together and regularly. Yoga has helped me lol! So many types of yoga. Mine was trauma informed and excellent. Then she left on maternity leave. So I stopped.
How to control your Endometriosis by Henrietta Norton is a good general book, for perspective to get you started. Her website is Wild nutrition and you can find the book on there. There are other things you can perhaps try to support your body.
Keep talking and asking questions on here. I’m glad you have answers with an eventual diagnosis and soon a treatment plan. Lists are long but help with support is here. You’re definitely not alone but it can feel isolating and it can be rough at times.
I wouldn’t pay much attention to the staging of your disease. Someone can have stage one with horrific pain. Someone with stage 5 can have no symptoms except struggling to get pregnant.
Thank you so much. I can't tell you how helpful all that is ☺️ I will definitely take your advice regarding the points to raise with the GP.
Reading back what I said, it does sound like I'm being dismissive of meditation and I don't mean to be. I've had family members who have used it for mental health purposes and I know lots of people find it useful for many reasons - it's more that I can't imagine being able to get into a peaceful state of mind when I'm rocking backwards and forwards in pain 😅 but I haven't spent much time getting to grips with it/learning the proper technique so it might well be useful. I'm certainly not wanting to dismiss anything off hand, at this point, I'm willing to try anything ☺️
I'll check out your book recommendation as well (thank you).
I'm so glad I found this community, and grateful for everyone taking their time to comment, including yourself, it's really reassuring ☺️
We all help each other. I hear you on the meditation. It’s just that so many people use it when offering us unsolicited advice 🙄 The yoga is especially popular 🫣🤨🙄 People on our lives get frustrated that we aren’t getting better. They make suggestions, and give us advice to try to help. Often well meaning but entirely infuriating.
When I realised I had Endo, the internet wasn’t as popular 🤣😂 I’m not even that old. Honestly the internet can be amazing, because of spaces like this, means the isolation can lessen quickly 🫶🏻🫂
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Any advice?
Exercise!! Absoloute bull#%^*
Undiagnosed endometriosis sufferer looking for advice 
Any advice would be great 
