New here - Advice for talking to GP - could it be endometriosis? Painful periods, irregular bleeding, bowel & fertility issues

[birdnerd]

Hi everyone,

I've never spoken with a GP specifically about endometriosis, but after speaking with a few people I have been wondering if it could be. I have been multiple times to GP about issues relating to menstruation (pain, irregular bleeding/spotting), bowel issues, and fertility as have been ttc for 3-4 years. Started fertility investigations (bloods & ultra sound) during covid, but then my husband had a serious health condition (thankfully been resolved now), so hit pause, but was referred to gynae about irregular bleeding etc., with plan to go onto fertility investigations after. And then we relocated. It meant that I slowed down on getting to the bottom of things and I need to restart gynae referral locally etc.

I have an appointment booked in a couple of weeks and would appreciate any advice on whether endometriosis is something to flag and if there is anything in particular I should highlight when talking to the doctor.

Thanks in advance - targeted questions at the end

Background

I've had v. painful periods since they began, often unable to walk, work etc., nausea and diarrhoea. For years I was on the pill, loestrogen 20, which caused extremely light periods and little to no menstrual pain during that time. As soon as I came off - bang, extreme pain back. I was prescribed metafenamic acid a couple of years ago (while ttc, with no mention of the side effects and implications, but that's another rant...). It does seem to help a bit, but still will be woken up with the pain, even when taken with codamol. And I've still had some (albeit fewer) excruciating periods where I have vomited form the pain, etc. These extreme painful episodes are often also tied to bowel movements. Often end up sitting on the toilet for long period of time. this then causes straining etc.

More generally, I also have had IBS symptoms, mostly constipation, extreme bloating and really bad indigestion. Painful bowel movements, but not consistently (also had various bouts of rectal bleeding from haemorrhoids, fissures). Symptoms still persist despite high fibre healthy eating (although worse if have been less careful). Excluded various food groups but couldn't understand why some foods seemed to be a trigger indigestion only at certain times - and as I started tracking my periods and TTC, realised how closely tied it was to my cycle, happening in the luteal phase.

I also experience sharp pains in my gut that I have often put down to digestive "issues", trapped wind or who knows what, but these are normally short and sharp.

But at the minute it's all a bit haywire, so for last few months 5-6 nights I'll get only a few hours sleep from the period pain or indigestion, had some of the most extreme pain to date, and feeling wiped out from the period itself. So it's impacting on work and general wellbeing and I am jut a bit fed up of it all.

Q: Are periods consistently extremely painful with endometriosis?

My symptoms vary month to month. All periods are painful, but often can be managed with prescription pain killers, although often will still be in some pain with a combination of metafenamic acid and cocodomal, and wake up in pain when next dose is due or an hour before. Often off work or WFH due to pain, lack of sleep etc. Less regularly, I will have extreme pain, nausea and vomiting from the pain, all encompassing. But I'm not in terrible pain EVERY month.

Q: Is irregular bleeding a symptom of Endometriosis?

I have had irregular bleeding for 5+ years, more often in luteal phase. Sometimes it's really light and bright read, other times brown, other times heavier. I had a Colposcopy, about 1 year ago which showed ectropian cervix. Also noted a tilted cervix. And also had ultrasounds etc but showed nothing. I have had irregular bleeding for 5+ years and not sure that ectropian meant to last that long, so not sure it is just that, or whether that is linked to hormones as definitely happening more in luteal phase. Past couple of months the irregular bleeding has been heavier, so will soak through underwear.

Sorry for such a long post... any advice much appreciated!

[Starry1977]

From your symptoms It does sound like you could have endometriosis. I can tell you I only got diagnosed this year at 45. I was on the combined pill from 16 to 32 with no issues and came off ttc which I did easily. I went back on the pill again for 2 years then stopped again. I was never able to get pregnant again. Slowly overtime my periods got heavier. Needing to change every 1 to 2 hrs on the first 2 days. I would be woken in the night with pains but not every month. I also would get tenderness in the bladder area even when the bleeding had nearly stopped. I got pain pushing to go to toilet which caused piles but again not all the time. Deep sex would be uncomfortable. I've also had hip and groin pain which was like a constant dull ache. I actually thought it was perimenopause and getting old as last year I started with night sweats. I only went to the doctors as for 2 months my periods lasted 2 weeks but didn't seem as heavy weirdly enough. I had an ultrasound which showed a 4 cm endometrioma on my left ovary. But no other signs. I had a lap in May which showed endo on my bladder, appendix, ovaries (which were stuck behind my rectum) an obliterated pouch of Douglas and frozen pelvis. Stagec4. A follow up mri also showed ademenoysis and another endometriosis nodule of 2cm in my pouch of Douglas with sever scaring. I'm a prime example of a non typical endometriosis patient. Intermittent symptoms, inconsistent pain etc which really did not show the severity. Good luck. Don't get fobbed off!

[S0nrisa in reply to Starry1977]

Thank you for sharing Starry1977 Sorry to crash another conversation, but my experience is similar to yours. After persisting with my GP for months and getting nowhere, I finally saw a gynaecologist last week. Despite mentioning that I thought I had endometriosis-like symptoms both on my consultation form and in person (my sister is a GP and first suggested it), I was told my symptoms are all ‘typical’ of perimenopause and I was prescribed HRT with cerrazette to use ‘just in case’. I’ll guess I’ll watch and wait, and hope for the best!

[Starry1977 in reply to S0nrisa]

It might still help. I started noriday to try and help halt any further growth. I luckily had a good gp I got referred to gynea as soon as they saw ultrasound results. Luckily I also have bupa with walk so I'm using that atm.

[S0nrisa in reply to Starry1977]

Thanks - that’s encouraging to know. I’m glad you’ve got the support you need. Have a good day.

[birdnerd in reply to Starry1977]

Thanks for sharing your experiences. I'm sorry it was so extensive by the time they got to it and I hope you are getting good support now. I'm frustrated with myself because I have known what endo is for a good while, but the inconsistency through me off, together with dismissive doctors when I have gone about various issues making me think I was making a fuss. It's good to be reminded that whether or not it is endo it is reasonable to want it looked into. Oh and deep sex also an issue for me. Thank you again, I feel ready to go and be insistent.

[Starry1977 in reply to birdnerd]

good luck. At a minimum request an ultrasound!

[S0nrisa in reply to birdnerd]

wishing you all the best birdnerd I hope you get some answers.

[Mony_1885]

I haven’t read the whole post because I have to get to an appointment but I still wanted to reply.

it absolutely sounds like endometriosis. I said the E word this spring and got my diagnosis this month I’m in my thirties and have suffered through school and work missing and going home early from both for years. Vomiting, ibs, blackouts I’ve had them all. Even when I said the E word, they were resistant to a gynae referral but I pushed and then had an ultrasound scan at GP surgery. What they saw there threw them into a panic to ensure there was no cancer and that’s what lead to my diagnosis. I’m telling you this so that you appreciate that they may not pay attention when you mention endometriosis and you may have to push a bit but don’t be discouraged. It’s bizarre to me that they haven’t considered it themselves but it doesn’t mean you don’t have it. It’s oddly common to have to repeat yourself to I be heard but it’s so important. They’ve gone from ignoring my requests to casually telling me they may take my ovaries out. If you’re TTC, you can’t afford to wait around. Good luck and. sending my love.

[birdnerd in reply to Mony_1885]

That sounds awful. I really hope that they're making more of an effort to involve you in your treatment plan and I'm sorry it has to be a battle to get to that point. But thank you for taking the time to reply, it's just so easy to dismiss things, or think oh it must just me making a fuss. So I really appreciate the advice, and I'm ready to be pushy.

[Mony_1885 in reply to birdnerd]

good on you! We’re all behind you!

[BloomingMarvellous]

Long history. Poor you 😳You might find the symptom tracker on the Endo UK site useful to present to the consultant so they have it all in writing instead of the endless verbal list we end up having to reiterate on a regular basis. I find it frees up the time to actually discuss how to tackle the problem instead of using the whole time with the recounting. Written versions emphasise the severity - they are less likely to swerve .

[birdnerd in reply to BloomingMarvellous]

This is excellent advice (especially as my ability to be concise its not the best... as evidenced above!). Thank you 🙂

[BloomingMarvellous in reply to birdnerd]

😂 I always debate “now given the 44 yrs of this issue where in the vast pick and mix array of symptom goodies do you want to start” as an opening gambit. Perhaps a T-shirt might say it all instead …

[Dee_EndoUK Moderator Endometriosis UK]

Hi birdnerd

To help you prepare for your GP appointment, we have a document on our website that should help - you can find this at endometriosis-uk.org/gettin...

You may also find our pain and symptom diary useful. This can be found at endometriosis-uk.org/visiti...

Hope this helps x

[birdnerd in reply to Dee_EndoUK]

Thanks Dee_EndoUK. These resources are really helpful and will be v. useful in helping me prepare - thanks for sharing them. Feel very grateful to the Endometriosis UK website and this community.