Gynae appointment today

[funkyduck]

Hi all.

I have been suffering with chronic pain since November 2017 (so not long in the grand scheme of things) and I was rushed into hospital because I had suspected appendicitis. After having my appendectomy I was told it wasn't appendicitis and that I had a ruptured cyst on my right ovary. They cleaned the cyst and the blood and all was ok for a couple of months until February. I felt agonising pain again leaving me in tears. But now it was all over my abdomen, sometimes going to my back and started progressing down my R thigh which I was advised could be the endo affecting nerves or something?? This pain started rearing it's ugly head again in feb and I'm still in agony to this very moment. I have been in hospital twice in the past month going through tests for everything. But today I had my appointment with the gynaecologist who stated that yes, the doctors ideas seemed correct that I very possibly have endometriosis. I have been placed on a management plan of the contraceptive pill continuously for 4 months then a break to see if this helps my pain.

Could anyone give me any advice? Does anyone else think its all in their head?! But mostly id just appreciate some ideas on pain management. Especially for the leg pain as it's SO annoying that I want to chop it off!!

Thank you if you have managed to read this far.

Leanne

[MrsNGoo]

I’m one of those people who hates the idea of taking meds. That the side effects outweigh the benefit of taking them. I have been prescribed a lot of different stuff and in my experience the pill has helped a little. U probably will spot on it but don’t stress it will be normal. And even if u do bleed it possibly won’t be as bad than if u weren’t taking the pill(contraceptive). I’ve not had success with normal pain relief, at this stage cosine does help but not always. Plus a good anti flam like Voltaren, I also take a high does of probiotics and cranberry for intestinal and bladder support. I’ve tried a few things and not all have worked. Hot water bottle is always a must. I too have been lucky to move quickly along with my diagnosis. I really noticed my being unwell in nov 17 too. And I have also had a massive amount of new symptoms which I’ve googled the heck out of to get understanding. I don’t know all the ins and outs but I’m learning quick. Leg pain, I get this but is like siatic nerve mostly. I understand that when your body is fighting all the time against this endo that it takes it’s toll and creates more places where pain is involved. Wether it’s to do with the brains connection with how the message of pain is sent. Or nerve problems or how we r being active. I think in my opinion only that it’s a web of crap that it all feeds everything else. One minute u will be fine next u will have the typical pelvic pain next hot fine and then it’s your legs or your chest or your back. It’s very confusing but google when u can ask whenever I like. But most important just understand that you don’t understand fully why, but just that it’s all the endo doing this and self manage as much as u can. And get some good meds

[Kerry_M]

Your level of pain sounds awful, and I think that’s one of the hardest things with endometriosis, in that you just want the pain to disappear ASAP and yet the process of getting appointments/operations takes so long. All the while we suffer.

The leg pain sounds like nerves, which could in fact stem from a tight back. As in, if you are very tense because of your pelvic pain, you will hold the tension in your back (lower and upper) and your pelvic floor. I had this explained to me by a physio specialising in pelvic issues. We have nerves that start around the base of our spine and come over our hips towards our pelvic area, then down our legs. I’ve had pain in my back, under my bum, and down both legs to my knees and a kind of cold numbness on and off. Was told just last week by GP that highly likely it was all connected and the best thing was walking and meditation but nothing that ‘pulled’ on the back like Pilates (which I’d done the week before for stress relief).

In regard to pain relief, that’s really tricky. I’ve not found a solution that works for me yet, except for a laparoscopy. But my endo pain returned after 4 months - I’m gutted. Releasing tension is really important; acupuncture can help with inflammation and pain; diet also. Other than that my gynae has suggested Naproxen or Codeine, but I feel really spaced out on both and nauseous; the Mirena coil, but I’ve read very mixed reviews which is off-putting; Zolodex which is an injection but brings on early menapause symptoms; or a hysterectomy. So I feel pretty lost really.

It’s hard not to feel really depressed about the pain, as it saps any enjoyment and puts me off booking holidays or days out with my kids. I hope the pill works for you, please do report back how you get on.

[Hidden]

Is the pain in your head? No it is not!

If a man was in severe pain, would anyone suggest it was all in HIS head? Nope!

This is the worst thing about endo and something so many people on this board have dealt with. Don't doubt yourself - you're right to seek help.

The pill is a good place to start (I loved it), and it sounds like your gyno is on the right track.

Other things I would try would be exercise - esp something gentle and good for core strength like swimming and yoga. This will help strengthen the back if there is any endo irritating the sciatic nerve, and hopefully reduce muscle spasm. I also really liked pilates when I was struggling with back pain (possibly endo related) - you won't notice a difference after one session, but if you keep at it, things do improve.

Finally - don't forget to check in with your GP for pain management if needed. They can help with things like anti inflammatories, co-codamol, etc while you're waiting to see the gyno again.

Hope this helps and keep strong!

PS Please don't chop your leg off! Legs are so useful.