Dead end!!

[cwhit]

Hi guy,

I got discharged from hospital last night after 5 days of being in there.. I've had pelvic pain/hip pain for about 6 months that's beginning to get constant. I had bloods done, ultrasound and they couldn't find anything although I'm very tender and very sore across my lower abdo. So after 5 days of strong painkillers including oramorph they have no idea what is causing the pain as all tests were clear.. I'm feeling very sick because of the pain.

I am being reffered now in the next 4 weeks to try and find the source of this pain.

Please can anyone who has been in a similar situation advise Me?

Thank you

[Abbs7664]

Is your referral to a gynaecologist?

Your symptoms do sound like endo, and it would not be found on any tests/scans unless maybe you also had endometriomas etc. The only way to diagnose endo is via a laparoscopy.

In the meantime, I know how hard it is to try and manage the pain. Painkillers, heat pads, baths etc can all help, but I'm sure you've probably tried all that. I recently got a cheap tens machine from the pharmacy and it's helped a little as well.

Other than that things like diet changes, yoga and meditation can help the way you manage the pain. Headspace has a good mediation series on dealing with chronic pain.

This disease is awful, and there isn't too much you can do about it 😥 Just make sure that you're getting in to see a gynaecologist, and at a BSCE centre if possible. I hope you get some answers soon x

[cwhit in reply to Abbs7664]

Yeah my appointment will be with gyanacologist hopefully in the next 4 weeks I'll see one. The pain is just ridiculous, I've had to reduce my hours at work because by the end of the day I'm in agony. I've tried baths hot showers, hot water bottles, it eases the pain for about an hour and then it comes back even worse.

Thank you for your advice x

[Lejay]

Sounds exactly what I went through. I was finally diagnosed with endo 5 weeks ago after laparoscopic surgery. After 2 years, negative tests and a misdiagnosis, my pain and symptoms got worse, my hip,pelvic, and back pain got so bad i could barely walk. I could hardly eat or sleep. I finally got a referral to a gyno, I made sure I typed and printed a list/notes of all my symptoms. I suggest doing this! We talked, he read it and said straight up that it sounds like endo (which I suspected) and we were right.

I totally understand what you are going through. The pain is debilitating and you feel like there will be no end to it. I tried different pain killers, panadeine forte relieved the aching in my hips and back a little bit but not really. The only thing that kind of eased it a bit was my wheat heat pack. I had that thing attached to me constantly, sometimes I clutched 2 of them to my body.

I didn't try the tens machine but I heard from other endo sufferers that it can help. But heat is a great relief, either with a bath and or heat packs.

Stay strong and if you are meeting with a good gyno, they should suggest a lap as that is the only way to find out if it is endo for sure. Good luck xoxo

[rae02]

Hi,

I’ve had really bad hip/pelvic pain for the past 3 years in just my right side. I’ve had numerous amounts of physio, MRI, I saw a chiropractor, podiatrist in case my feet were the issue and then I saw an osteopath. I was given different painkillers to try (codeine, Nefopam and amitriptyline) which didn’t work. When I saw the osteopath he had asked about my menstrual cycle and if I had issues but I did when I was younger so I said nothing. I then kept a diary and I soon noticed a pattern to my pain. I spoke to a doctor but she just told me to take ibuprofen so I saw another and he referred me to see a specialist in endometriosis. I had my first lap 3 weeks ago and they have found endometriosis scattered about, I’m not entirely sure exactly where it was and I’m waiting for my follow up in September

[ourmolly]

I had severe pain as soon as my periods started. Then things got worse, heavy bleeding & clots, plus from my bowel. Hence, endo. Hysterectomy at: 28, but ovaries were left. I am: 63 but still have rectal bleeding with pain. Keep on at your GP and Consultant. I was many years not knowing what was causing my rectal bleeding. I also have a rectal ulcer. A life of bleeding and abdominal pain. I can only eat small meals as I suffer from pain after eating. Just keep fighting your case. Good luck.

[Thecraftyadder]

Sounds like me last year. I nearly had my appendix removed in error, then I was discharged and nothing was done about the pain and nausea. I paid to see a endometriosis specialist privately in the end as was desperate for answers. Hopefully your gynaecologist will recognise the symptoms and refer you for a laparoscopy. I had horrendous hip and back pain. Constantly felt sick. My abdomen was tender to touch. Bloods showed nothing, CT and ultrasound just showed some fluid but I had deep infiltrating endometriosis that was found in surgery. I'd definitely be keeping a pain diary for the next few weeks. There's one you can use and good advise on endometriosis UK website. Wishing you all the best for your appointment

[chloe8999]

I've read some have had success using the supplement Serrapeptase. It's an enzyme and I've seen a lot of anecdotal reports of it helping to dissolve cysts, fibroids and to help with endometriosis. It might be worth a try considering your pain. I would do a search for it on this site and you will see a lot of threads about it. I hope things improve for you soon!