I’ve had really bad hip/pelvic pain for years which is still un diagnosed. I’ve had blood tests, seen physios in the NHS, private physio, chiropractor, osteopath and a muscoskeltal specialist and still no one has a clue what it is. I have been told to take ibuprofen, codeine (which makes me feel ill), nefopam and most recently amitriptyline nothing has worked for me.
I have started keeping a diary and have noticed that there’s a pattern usually a week before my period my symptoms get really bad as soon as my period finishes it seems to go. Prior to being prescribed the pill I use to pass out due to my periods, experience diarrhoea, extremely bad lower back and stomach cramps, heavy periods which were irregular and acne.
The pain always seems to come when I walk usually, but most recently the pain has changed it’s more in my groin and down my leg. My lower back aches constantly as does my hip all of which are on the right side, I had appendicitis in 2010 and the pain seems to be in a similar area to where I felt that. Recently I’ve had 2 weeks prior to my period where I’ve just felt as though I’ve had constant period pain, I struggle to sleep on my right side sometimes as well. I went to see my GP a few weeks ago and they just told me to take ibuprofen, but I’ve now booked in again and not sure if to ask if it may or could be endometriosis as my symptoms seem to fit many things.
Can anyone help?
do I have endometriosis?
Do I have Endometriosis? 
Have I got Endometriosis?
Do I have endometriosis or just a cyst?
is this all in my head? or do I have endometriosis
You sound just like me. I've had pelvic pain on and off for years but more recently it's been constant. I'm swollen on my right side and uncomfortable and also lower back pain which radiates down my bum and right leg. I had an appendicitis years ago and have pain just under my scar. It also gets worse throughout the day and I'm exhausted by the time I get home. I'm being referred to a gynecologist as I'm certain it's not musculoskeletal, which was suggested as usually my pain, nausea, dizziness, exhaustion etc are cyclitic however currently pretty much permenant. I've always suffered from chronic cramping where it's affected work and university. Endometriosis has been mentioned by various GPS over the years but nothing done as blood tests and ultrasounds are always normal. I've been on various contraceptives, even prescribed antidepressants after turning down the suggestion of a hysterectomy?!! I never saw that doctor again! I'm pushing to get to the bottom of it. If no luck with the gynecologist I'm going to ask for a referral to an endometriosis clinic as I've recently discovered one where I live. Don't let doctors fob you off. Good luck!
I managed to get a referral to see a gynaecologist who specialises in endometriosis which I went to Thursday. He said he couldn’t be 100% sure it’s endometriosis from just the internal examination as I didn’t experience any pain during that. He gave me the option of either leaving it or having the laparoscopy, I decided to have the laparoscopy which I’m now waiting for a date. However I’m now second guessing myself and worrying what if they don’t find anything then I’m back to square one and I feel like I’ve exhausted most options. He did say it could be my bowel and he did mention something else which I’ve forgot the name of but to do with the womb.
The only way to really eliminate endometriosis is with a laproscomy, stick with your initial gut feeling. If it turns out it's not endometriosis then you can focus on exploring other routes. For me, endometriosis is the only thing that makes sense with my symptoms over the last 10+ years. My mum suffered too and endometriosis was suspected with her but nothing was done about it. Ive been tracking my cycle and symptoms on apps for over a year and I am now keeping a separate pain and food diary. If you remember the name of the womb thing, could you let me know please? Thanks 😊
The similar condition to endometriosis is Adenomyosis and very similar to endometriosis. I’ve just had my letter through for my ultrasound which is Monday evening. I’ve then received my letter for my laparoscopy date which is Friday 31st May 😐
That's good you have a date, it's not going to be fun but hopefully help and be worth it. How long did you have to wait for a referral?
I saw my GP 11th March who sorted the referral to a gynaecologist for 21st March. I then got my appointment for my laparoscopy yesterday for 31st May so it’s not been long at all. How long is recovery? I’ve read if there’s no endometriosis and no treatment needed it’s as little as 5 days but if I do need treatment it could be up to 6 weeks.
That's quick. It's been over 2 weeks since my Dr appointment and not heard anything. I'm hoping to hear something soon. I've read average is about 2 weeks. It doesn't sound easy but then I suppose it depends from person to person. If endo is there, removal should hopefully give some relief making it worth it.
Yeh my GP referred me to a private consultant it’s by One Health but they take on some NHS patients and they aim to get all treatment done within 18 weeks of your first consultation. I know after having my appendix removed it was 2 weeks I wasn’t bad after that it was just the tramadol that made me feel rubbish. I am glad I may finally know what it is causing all this pain still worrying I may not be non the wiser. My pain doesn’t seem to have been too bad the past few weeks but since yesterday it’s been terrible. I’ve got period pain cramps constantly and my period isn’t even due for just over 2 weeks
Oh wow, I'll look into that. A lot of my pain and swelling is around my appendix scar, I had it out when I was 11. I don't remember it being too bad after a week or so, so a laproscomy should be OK within 2 weeks, I hope anyway! Tramadol is evil! I lived off it for months due to ligament damage in my wrist, I avoid pain killers if I can now. I feel you there! Half way through my cycle the pain turns up a notch and breasts start to kill!! I'm due on in a week and I feel like I've been punched in my boobs and have stabbing in my right lower abdomen and down my thigh. I tingle on my right side down my thigh too, it feels weird, something happening to my nerves. I've been swollen for about 2 months now too which is just uncomfortable.
Mine were removed when I was 21, I never use to get pain in the same place as appendicitis till recently. Mine is always my right side down my leg, lower back, into my bum I do feel like it effects my nerves too. I haven’t experienced any swelling at all but from time to time I do feel or become quite bloated.
Me neither until recently, there could be lesions on the scar. My bloating varies but the closer I am I my period, the worse it gets, but the swelling I can feel and see on my right all the time. It's weird.