I’m 33 and have recently been diagnosed with endo including recto endometriosis. I am really struggling with pelvic pain which I’ve had for years but is getting worse and just won’t go away even after the laparoscopy and removal. I really am at my wits end where it’s starting to affect my life. I wondered if anyone can suggest pain relief? My surgeon thinks it could be nerve pain. Paracetamol and similar have no effect, I was prescribed Amitriptyline to treat nerve pain but unfortunately I couldn’t take them.
I am also having a lot of issues with IBS, it seems to really flare up at lunch time no matter what I eat, once it flares up I’m in agony for hours.
Sorry for the long post! I’m just exhausted dealing with the pain and would love to hear of recommendations to help.
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Amy3333
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Hi Amy, I’m so sorry to hear you’re struggling. I haven’t had a diagnosis yet, just going through the ‘investigations’.
I thought I had IBS as I get all the symptoms and literally no matter what I eat, it flares up. I don’t know a great deal about all this as I am new to it all, I hope someone on here can help you x
I’m still awaiting my diagnostic laparoscopy but have all the symptoms of endometriosis. Like you I’m suffering with nerve pain. I’m not sure if it’s Endo related but it put me in hospital last week. The last 2 weeks I’ve had sciatica in my right leg, bum, hip, back and pelvis, the pain has been so bad it’s caused me to throw up. The hospital are sending me for an MRI and I finally have a date of 23rd July for my lap. The last 5 days the pain has turned to numbness in my whole leg and foot so much so that I’m struggling to even walk. I’m currently taking codeine, paracetamol and ibuprofen and using a hot water bottle but nothing is helping. I’ve had sciatica in the past but never this bad and like you it’s now affecting my bowel movements too. I’m at a loss with what to do next so if you find anything that helps please let me know...
hi. Sorry your struggling, endometriosis is draining. I got diagnosed in 2016. When was your lap and what stage is it? I had awful pelvis pain due to the endometriosis but after surgery with a bsge specialist it was reduced. I get niggles from nerve damage but there isn't much to be done with that. Yoga and swimming helps. For medication tramadol and amtrityline worked for me along with a trusted hot water bottle! Have you heard of the endometriosis diet? I got to the point I was in pain whenever I ate, I did it strictly for 6 weeks and it really helped ( I have endometriosis on my bowel and certain foods really flare it. Up). After some experimenting with it I've mostly figured out what I can and can't eat 😊. I do find taking paracetamol and buscopan helps if I've eaten something that kicks it off. Xx
Hi I'm in the same boat I haven't been diagnosed yet I'm beening sent for test with a specialist as they have found fluid in my fallopian tube and that endometriosis could be causing it. It effects all my legs and bowel I've had this for about 2 years now and finally waiting for help and I got told the first time id pulled a muscle which is such a silly reason tbh I knew myself something was right I currently take cocodamol which I think doesn't help at all if you find anything that helps could you let me know please x
There is Nancy Nook endometriosis education Facebook page.. There is a lots of info there. I learned some surgeons has interest in nerve pain. The key is to find the right experience surgeon so he can do excision laparoscopy
Hi, I havent had surgery yet but on the waiting list. I was diagnosed with endo September 2018. I too have a flare up if pelvis pain so severe I end up in hospital every 2months where it flares up and I can not walk properly. This morning I am off to the gp to ask for a referral to a pelvis pain clinic. I referred myself to a bsge centre in April due to being admitted 8 times to hospital. My bsge centre has a pelvis pain clinic hopefully they can help me. I am also going to ask for physio as I have read on someone's post before that physio for pelvis pain is good. I been told I am on the highest dose of pain killers and nothing really works. The only pain killers work are the ones when I am hooked on a drip but that's not how I want to live my life.
Maybe you should ask your gp to refer you to a pelvis pain clinic at a bsge centre. I would say hands down the hot water bottle has helped me get through without taking a trip to the hospital. Good Luck.
Hi so sorry to hear about all your pains. Well i have the same as you. I was also pescribed amitriptyline and couldnt take it made me very sleepy. Im on tramadol and paracetamol. For nerve pain i also have endo and rheumatoid arthritis. And severe ibs. I have started a fodmap diet its recommended for ibs sufferes it help so much, please try it.
I was put on morphine in feb x can’t say it works but if I forget to take it I know about x nothing will completely get rid of the pain x I’m waiting for surgery and hoping after that to get pregnant x
Hey Amy! Sorry to hear your suffering, hopefully some comfort knowing your not alone! I had my Lap in March where Endo was found on my bowel and womb and after a couple of weeks recovering my pelvic pain was back with a vengeance, I generally feel pain daily and take paracetamol and dihydrocodeine for the pain which eases it but doesn’t completely stop it, I’ve tried most things now but struggling to find anything that works well! Ive found the pill or hormones makes it worse and after a really bad flare up yesterday I’m back in the hospital tomorrow 😞 like you I’m at my wits end and don’t know what more I can do, it’s having A huge impact on my life and work so I can completely relate to how your feeling. All I would say is keep pushing the doctors to see if there’s any alternatives for you to try, like the above comments it might be worth trying the diet plan and keeping a diary of when you getting the pain and what food you’ve eaten to see if you can identify if certain things are triggering it. I really hope things improve for you soon and you are able to find something that suits you x
I was advised one book by a lady physio called 'healing pelvic pains' by Amy Stein. She advises self tummy massages , pelvic floor exercises, diet. If it can help...
Hi Amy! I have the same diagnose, and I can happily tell you that I don't suffer from that pain as usually as I used to, and that is sooo awesome! Here's what I did. I got a laparoscopy to remove all the endometriosis focus on the area, and after a lot of experimenting, I'm taking dienogest with ethynil estradiol, and I do yoga and meditation almost every day, at least 20 minutes. A good gyn is also a key. Good luck girl!
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