chronic pain getting worse

[Mastiffmum1980]

I’m really struggling 18 months ago I has sepsis and a burst ovarian abscess. Since then cysts have come back and I have also been diagnosed with endometriosis. As I had a laparotomy my consultant has stayed away from further surgery to help me recover and die to scar tissue etc. last app I’m June he said he’ll operate however it will be tricky but he can do it. I have a large endometria over 6cm at last scan and scattering or other cysts so he’s going to remove the cyst clean everything up and finish with ablation for my bleeding. He said wait for 4-6 months last 2 weeks I’m in absolute agony my hips lower back feel like they are pulled in the wrong direction and this is all the time now all day. Taking cocodomol and naproxen I don’t even think they are touching it. I’m so fed up spoke to gp who said to continue on meds I’m on but be careful with cocodomol So I’m 2 months in and wil prob be waiting a long time. I wake up with what feels like a hot rod in my hip I can barely stand up in one go it’s really getting me down now obviously it’s come back full force now. I had Decaptyl for 6 months end of last year and can’t believe how it changed my life.

has anyone else had similar pain? Any advice appreciated

[Tropic]

So sorry to hear about your terrible and painful time 😔 I am having an awful time at the moment too. The only thing I have found to help is taking some pain meds along with rest, clearing my schedule (so I can just stay in bed) and focusing on a clean diet to improve gut health, as endo is an inflammatory disease so for me I find controlling the inflammation through diet makes a big impact on my symptoms. I hope this helps. Much love and strength to you 🤍

[Cailleach]

I take it this was a general gynaecologist you have been seeing and you are not being treated at a specialist centre? The symptoms you are describing with your back and hips could be from deep endometriosis and it would be worth you getting back in touch to discuss these symptoms, and also to see if they can recommend anything that will help you with your current issues until they are willing to do more surgery.

Your GP should be able to prescribe a better mix of painkillers for you, it seems they are not taking seriously the degree of pain you are in. Sorry, you will probably need to keep on at them though.

If you join the Facebook group Endometriosis Guidance and Information Resource UK they have useful files you can access, including one on Endo Symptoms, which covers the kind of back and hip pain you are describing.

Hope things improve for you xx

[Mastiffmum1980 in reply to Cailleach]

No it is an endo centre it’s just the wait for the op now I’ve got in touch with my consultant just waiting for his response about what I best to ask for from my GP I’m going to insist on an appointment with my named Gp as he is really good with things just hard to get an appointment with him

Just hate they way it’s taking over my life again. My consultant knows about the pain it’s just starting to build again. They have hung off operating as I has sepsis from an abscess and had to have a laparotomy 18 months ago and was really poorly so he wanted me to recover as much as possible first.

My period came today and the pain was excruciating I was bent over double crying it was so bad. My mood is so low now. Along with my esteem confidence and everything!

Thank you for your reply x I will look for the group now x

[Cailleach]

I was concerned if it was a Gynae with less experience they might miss the deep endo but that’s good if you are already with a specialist centre. Sorry to hear things are so bad right now. Have you thought of calling NHS 24 as it’s a Sunday?

If you are with a specialist centre they may have a pain specialist attached who could advise on better pain relief?

Anyway, hope things are better soon x

[Mastiffmum1980]

I’ve been monitored for the last 20 months scabs every 3 month etc and I had the Decaptyl injection for 6 months back end of last year I kinda regret it now cos it showed me how it should really be no pain no headaches etc. my consultant refers to it as inflammation as when I had the laparotomy the absess had burst so they literally scraped and washed me and everything was stuck together. But he has said that even without surgery they are confident it’s endo if that makes sense. I have looked at the centre I’m at on bgse and it shows a pain specialist there too so maybe once I get a response it will help to go to my GP and say I need to try this! Time will tell. I spoke to a lovely very understanding Gp 2 weeks ago but he’s not from my surgery he’s from extended access!

Judging on an episode 2 years ago I rang nhs 24 and they sent me to a and e I don’t really want to be sat there all day in this heat will make me feel worse so a warm bath and just have to relax and ride it out for now. Hopefully I’ll get a response soon and a gp appointment soon too.