Sudden increase in pain, feel very lost...

[sji5]

I was diagnosed with endometriosis in 2010 and had a laparoscopy the same year to remove it, it was mild in a few areas. I've been on the combined pill since I was 16 (now 22) and I've always had heavy/painful periods. What really got to me was bad pain during sex when I was about 20, which made me feel sick and left me feeling upset. The pain could linger for days.

I have also come off the combined pill because a doctor wasn't happy with me on it because of migraines (had them since I was 10) so I'm also worried that nothing is stopping the endometriosis.

The reason I'm feeling so lost is I got agonising pains on Monday night in my lower back and the right side of my abdomen. I eventually went to a Walk-in Doctors on Tuesday who admitted me into hospital for suspected appendicitis or kidney problems. After scans and blood tests which were clear they said it's probably caused by my previous history of gynecological problems and have booked me a gynae outpatient appointment.

I just feel quite lost, I haven't had back pain really with this until now. Coming off the pill too is worrying. I don't know what's available and don't really know what to do anymore. Last time I was under gynae they weren't very helpful or understanding if I'm honest. Any advice is welcome.

[squidgy]

Hi

Sorry to hear u having a bad time of it recently. Good to hear they refering you back to a gyno tho. I hope this one will be more understanding than the last one you saw.

You didn't say what combined pill you were on. When I was on ones like microgynon (sorry if mis-spelt) like you I got migranes. The GP put me on the pill "Loestrin" and with this I suffered no migranes. Mentioned something about the oestrogen levels and that causes headaches so Loestrin is lower in that hormone or something like that. If you have not tried this pill maybe ask your GP to try it?

Re your unusual back pain, it could be that your endo is progressing and causing more pains. Or that because you are off the pill the endo is fighting back with avengence. Someone on here had a great analogy of endo saying it is like weeds, you can kill the leaves above ground but they just grow back with more vengence and more determined as not got to the roots underneath!

Sorry I cannot be of more help. Hope you get seen soon by the gyno and things sorted for you so you can feel a bit more normal again.

Best wishes x

[Hidden]

Hi my problems might help with what you got I've only just been told I've got emdo and I'm having a lap on the 5 April I have very bad pain in my pelvis back and legs and like you I have pain in sex and makes me feel sick and it can give me a bloated feeling's for days afterwards they think I got ligament damage which is attached to my coccyx which is why they think why I have my pain. I don't know how bad my emdo is so I will find that out with my op. hope this helps.

[sji5]

Thanks for your replies. I've had migraines since before puberty but the doctor at the time thought it was worth putting me on Loestrin, which didn't suit me. I tried Yasmin and was on that for years with no problems. I see a few doctors and they all have mixed opinions on the pill with migraines and endometrioris. The gynae consultant at the time said the coil but none of my doctors wanted that because of my age and I haven't had children.

It helps knowing others are or have been in a similar position although I wish we could all be free of this! Kill the weeds!

Good luck with your op Spiritmind

x

[ginag26]

Hi your story is v similar to mine, I hope my story will give you some helpful advice and if you have any questions feel free to message me.

I was diagnosed jan 2012 after countless trips to doctors, scans, faulse diagnoses over and over again over the cause of 9 years.

I'm now 26 about to turn 27 I had my endo removed by surgery last October and like you was told it was mild, I had suffered with painful periods and painful intercourse also leaving me in pain for a few days, this had been my biggest problem with my endo I was able to keep the pain durning periods under control with the pill and pain killers. But again like you my doctor was concerned with the migraine I had suffered over the years and wanted me off the pill. This worried me and my gyne suggested I go on the Mirena coil they said they would put it in durning my surgery to have the endo removed.

Since my sugery last oct things seemed better the coil settled and the period pain was less intercourse seemed a little easier too, that was untill mid jan when things seems to flare up again I went back to my gyne and he said they can only remove what they can see and suggested I start prostap injections.

I would recommend the coil although the pain had returned and is worse now than its ever been my periods became lighter and less painful, due to where the majority of my endo is, is the reason for my painful intercourse and it's too soon to comment but I'm hoping the injections will help ( unfortunately I've not yet tryed to have intercourse as I'm sure you feel the same but I feel v nervous about it, thankfully my partner is really patient and understanding.

I'm not sure if I've explained v well or have just babbled on, I guess what I'm trying to say is get referee to a gyne who specialises in endo and discuss your options there are other hormone pills you can try and the coil. But just make sure you are happy with your course of treatment and get all your questions answered if you don't feel your doctor is helpful or understands the disease you have the right to be referred to someone else.

I hope this helps in some way!!

Gina x

[sji5 in reply to ginag26]

Gosh it is a similar story, thank you for sharing it. My gyne consultant wanted me originally on the pill for 6 months with no breaks but this would have been bad for migraines/stroke, and then the coil as a second option. My GPs didn't like either of those options. Now I'm off the pill altogether because of migraines, I'm nervous wondering if anything is keeping it at bay.

I don't think I can have the injections because it conflicts with a migraine preventative I'm on (Topiramate) which is an anti-consultant. There doesn't seem to be a simple option ha! Migraines and endometriosis really don't mix.

I've got my appointment through and it's in April so I'm going to explore my options. My biggest problem was/is painful intercourse. It's nice to hear your partner is understanding, it's a difficult time but hopefully the injections will help!

Thanks for your help, you haven't babbled on at all!

Sam x