Looking for advice?

[erinmgm]

I have always suffered with extremely painful periods. Last September they started becoming irregular (only having between a couple of days to a week between bleeding) they were extremely heavy and painful to the point of passing out at work and codeine didn't even touch the pain. I was prescribed mefenamic acid, tranexamic acid, nothing seemed to be working. I had various blood tests, ultrasounds and swabs. Everything came back clear. I was referred to a gynaecologist last December who told me there was nothing wrong with me and "its just how I am" he put me on the combined pill and told me to take it every day to stop any bleeding and to only stop if I have significant break through bleeding. August just gone I had significant breakthrough bleeding. I went to the doctors for advice. They said to come off the pill for 5 days and take mefenamic acid. I did this and about 5 days later I had significant breakthrough bleeding again. This has happened 5 times since then with the doctors giving me the same advice and ignoring the fact I was in extreme pain and had been bleeding heavily off and on for the past month. Relying on mefenamic acid to stop the bleeding each time. I had had enough and decided to go to a&e. They sent a letter through to my GP telling them that they believe I have endometriosis and that I need various blood scans again and maybe a laparoscopy to definitively diagnose it. My GP said she never got the letter and reluctantly booked some blood tests anyway after much persuasion. My blood test appointment was today however, my appointment was cancelled. I am extremely worried I am constantly in pain, tired. When I am bleeding I can't even get out of bed. I have already lost one job due to phoning in sick as I physically can't get out of bed. I know there won't be any medical professionals readying this but I really would like some advice on what to do next. All I want is to know the reason why I am constantly experiencing so much pain, fatigue and irregularities with my periods.

[erinmgm]

I forgot to mention in the post that I have been referred back to gynae. I also suffer from migraines and nausea which is constant but worsens during periods to the point of not even being able to eat. Me and my partner are both really worried as we don't know much about endo and how to treat it and how much it is going to affect me long term. Any help on what you think this could be and what to do next would really be appreciated

[Noguat]

You need to continue to push it with your GP. See another doctor at the surgery if you can. Ask specifically to be referred to a gynae specialist and preferably somewhere that specialises in endo treatment (you'll need to do some research)

I was told to try mefenamic acid and it did nothing at all for me.

Don't give up, you deserve answers. No one should suffer that much pain without at least knowing what's causing it! Xx

[erinmgm in reply to Noguat]

I've been referred to gynae I'm just waiting for my letter. I have decided to move surgeries as I have seen every female doctor at my current one and they are all so dismissive and denounce everything I say. It's so frustrating and tiring trying to get diagnosed with endometriosis. I just know I'm myself something (even if it's not that) just is not right.

[SeaCow]

Hi Erinma,

That definately sounds like endometriosis to me, and it sounds really bad, so you have my utmost sympathy and support.

-For the time being it sounds like you need a stronger painkiller. Tramadol or Codeine. A&E also gave me oramorph, but this is hard to get from GPs, especially without an actual diagnosis through surgery. Changing GPs, seeing a male GP at your current practice, or going back to A&E could be options. There should be seen by a gynaecologist at A&E if you go in office hours. Could you ask for a copy of any letter or get the original letter?

-Mefenemic acid etc won't do anything if you have lots of endometriosis inside you.

-This NICE guidance: bsge.org.uk/centre/ for GPs has only just been published because GPs don't know a bloody thing about endo. Could you take some in to the GPs?

-Endometriosis is hard to treat, so is best done in specialist centres. There is a list here of accredited ones, and these are really the only ones recommended to be doing surgery. bsge.org.uk/centre/ But whichever you have been referred to, can do initial tests (MRIs, pelvic examination, internal ultrasound).

-Endo does not always show on ultrasounds, especially actually if its really bad, and is affecting your bowel. So, don't be fobbed off by GPs etc telling you there's nothing there. I had three 'normal' ones, and had severe endo affecting my urinary tract, bowel and ovaries.

-There is info on endo on endometriosis-uk.org/ And they have a helpline too for when you need to speak to someone, and there volunteers are great. endometriosis-uk.org/helpline

I hope that helps a tiny bit, and you get on the right course to some proper treatment soon....xxx

[SeaCow in reply to SeaCow]

Sorry Erinma, I put the BSGE link in twice, and forgot the NICE one. Its: nice.org.uk/guidance/ng73

x

[princessk09 in reply to SeaCow]

Hey, I’ve been given mefenamic acid and it doesn’t work for me. I haven’t been diagnosed yet but the doctor didnt believe me when I said it doesn’t work and kept forcing the combined pill onto me but keep refusing as I suffer bad side effects of mini pill and etc and my tests and ultrasound came back clear as well

[SeaCow in reply to princessk09]

Ultrasound will not always show endo. You can ask to be referred to a gynecologist. Take the Nice guidance with you for your GP (link is above). It outlines the steps GPs need to go through, and mefanamic acid is for mild. Having endo excised by a specialist gynecologist is the gold standard treatment for endo.

[erinmgm in reply to princessk09]

Yeah they never seem to believe me when I'm saying these aren't working and try to explain how much pain I am suffering. Today I woke up exhausted after 8ish hours unbroken sleep, fell back to sleep while getting ready and was in so much pelvic pain as if I was on my period but with no sign of it whatsoever. Definitely need to push this further.

[erinmgm]

Thank you for replying. I'm currently on 2x 30mg codeine 4x a day as prescribed. Looking on that website my local hospital (the a&e I went to) is an endo centre. So maybe going back there would be a good idea. I'm glad someone else thinks it sounds like endometriosis. Its quite reassuring. Doctors make me feel like I'm over reacting to having a normal period when I'm trying to tell them that they are not normal and neither is having 3 periods in the space of 4 weeks. Thank you anyway for the advice I will definitely take these documents with me next time.

[erinmgm]

I have been referred back to a gyae I am just waiting for my letter. I'm also on 2x 30mg of codeine 4x a day. Looking at that link my local hospital is an endo centre. So maybe I should go back there. Anyway thank you for the advice. I will definitely look into it.