Do I have endometriosis?: I’ve had really... - Endometriosis UK

Endometriosis UK
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Do I have endometriosis?

rae02
rae02

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?

26 Replies
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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!

rae02
rae02 in reply to Aino26

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.

Aino26
Aino26 in reply to rae02

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 😊

rae02
rae02 in reply to Aino26

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 😐

Aino26
Aino26 in reply to rae02

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?

rae02
rae02 in reply to Aino26

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.

Aino26
Aino26 in reply to rae02

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.

rae02
rae02 in reply to Aino26

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

Aino26
Aino26 in reply to rae02

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.

rae02
rae02 in reply to Aino26

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.

Aino26
Aino26 in reply to rae02

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.

Can a light period sign for endometriosis too? No?

Aino26
Aino26 in reply to introuble

Mine alternate from heavy to light with pain excruciating either way. Generally heavy is a main symptom but from what I've read, light periods can't rule out endometriosis.

I have endo but I didn’t suffer from heavy periods because I have an IUD. However, before I was on BC I had awful heavy bleeding.

I had your exact symptoms and had an exploratory lap for endo last Tuesday. I was convinced they wouldn’t find anything and to my relief they did find endo on my right ovary, which is where all my pain was. I would suggest going to a gyno or an endo specialist. You could very well be suffering from endometriosis.

rae02
rae02 in reply to liliesinbloom

He made me feel like it might not be endometriosis just because I didn’t experience pain on examination but then I thought welly surely he wouldn’t let me have a laparoscopy if so. I did agree to go ahead with it and he is a endometriosis specialist I am now just waiting on my appointment for it.

liliesinbloom
liliesinbloom in reply to rae02

That’s good news! I wish you the very best. I know one of my fears was having the surgery and then the doctor not finding anything, but I can assure you that pain is never normal. I hope you get a diagnosis soon. :)

rae02
rae02 in reply to liliesinbloom

Thank you very much! I’m just so worried there will be nothing which is good but then at the same time I’d be back to square one unsure what it is and I’ve tried alsorts. How long did you need to have off work to recover after your laparoscopy? I’ve just started a new job (only been there a week) working at a school hoping I may be able to get in during half term

kee_jd
kee_jd in reply to rae02

Hey, I didn’t have (more) pain on examination. Laparoscopy found stage 4 endo.

rae02
rae02 in reply to kee_jd

I know everyone has such different symptoms but the consultant just made out as though I should have had pain on examination or more pain. What symptoms/pain do you notice?

Heya, I was just wondering what the results of your lap were? My pain is identical to yours! Xxx

I had minimal endometriosis found on my pouch of Douglas and perineum. However my surgeon said that this amount of endometriosis wouldn’t cause me the pain in my hip and down my leg.

I have your exact symptoms with lower back pain & pain in thighs & buttocks. I was due an Diagnostic lap on Tuesday which was cancelled last minute its now 27th Feb. I also had my appendix removed about 8 years ago. So got to see if they find anything.

Well I hope everything goes well for you when you have your lap. Since mine my surgeon sent me to see an orthopaedic consultant as he believed my pain was my bones and I was told it’s not. I’ve had to try amitriptyline 25mg gabapentin and now been put on pregablin to try for the pain. Also was told recently that before my op I had an ultrasound that both my ovaries are polycystic yet I was told my scan was all clear

Thank you I take amitriptyline at night for pain at moment while they are waiting to see whats causing the pain. I had a Trans vaginal scan & was told my bowel was obstructing ovaries but consultant think ovaries are fine so just got to wait till 27th Feb so annoying it was cancelled on the day though.

will soon come around I’m sure. I’m just feeling very frustrated as I still don’t seem to have an explanation for my pain I’m not sure what the next step will be. I’d like to see a gynae for a second opinion

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