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Endometriosis UK
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Advice needed

Hello I've done Voice recognition so please bear with me to all of you and hope you don't mind me posting here and not been diagnosed and is part of my story.

If you just want to pass on to the next you don't wanna read all of it that's the main bulk of my problem I just need to know if anyone else has been going to this thank you for reading

I didn't start period until I was about 15 it was very painful and quite heavy and lasted about three weeks A few weeks later had a scan at the gp and so I was then diagnosed with PCOS was put on the pill (3weeks on 1 week off so had a period) it was to try and mimic a normal cycle to regulate me. I tried various different ones because none of them seem to help with my periods and I was very moody. Meet my Matt at 18 sex was ok up until I was 20 Matt told me to come off the pill because it was driving him crazy I was extremely aggressive and easily bad tempere. It was him or the pill so I kept Matt. :) My moods improved straight away. I rarely had a period maybe every six months or sometimes even up to a year sometimes four months apart.. I got diagnosed with diabetes and underactive thyroid at 23 and a lot of emotional stuff with my family A lot of stress and strain. When I got to 27 I had a miscarriage at 12 weeks then I had another one at 6weeks I was 29 I'd Lost quite a bit of weight. 4 weeks after my lost mc I fell on straight away I had a lovely boy. He was six weeks I fell on with my very health girl and my family was set that had taken meny years to get ha I got.. So after my gorgeous girl I was very regular every four weeks my periods were quite painful and heavy for the first few days and last about 5 days at that time I had alot of fatigue went to the GPs a lot only to be told that it was just the fact of having two children so close. I have the marina coil fitted it was dreadful the worst thing I could ever have done I was constantly bleeding and had Constant pain so I took drastic measures because the doctor had told me that I would have to book an appointment and it would take up to 8 weeks to get an appointment to take it out so I took it out myself. And within minutes of taking out there was no pain. Probably the best thing I've ever done I told everyone that it's fellon out Whoops (I know its bad and I would never recommend for it to actually be pulled out by yourself) but I have to do something it was driving me physically and mentally I was at the end. AnywayI had a few heavy and painful periods over the next three months and at 32 I accidentally fell on with my second boy :)) over the moon he's so beautiful. The fatigue got worse and I started getting pain all over my legs my arms my neck ,back everywhere it was awful I went the my gp and was put down to postnatal depression and having 3 children in 3.2 years.

I'm now 35 and the pain/fatigue has never gone away.i can be in bed 3/5 days at a time with a few day being ok ish not going out ,needing help to get dressed to the toilet etc Matt had to give up work to look after the kids and me it was a nightmare. So have been diagnosed with CFS of which I was happy with kinda boo... I have tried the mini pill that was horrible I get very bad migraines. I told my medical Health professionals that I don't want to be on artificial contraception of any kind. Anyway my periods wasn't too bad considering I mean they were heavy and painful but manageable i'm on quite a lot of medication pain mads anyway so combination of that helped but about a year ago my periods were getting a bit extreme either disappearing for a month or 2 or lasting three weeks. When I had that Break when my periods were absent I felt really quite well more energy not as much pain I had very little stamina that point I still had to stop and have lots of rest etc but overall quite well. In November I started the most painful period and with clots it lasted just over five weeks it then stopped for two weeks I had like a mini period with no pain and wasn't heavy after a few days stopped and then a week later I started the period I'm still on now I'm going on nearly 8 weeks now on saying that I've been to the gp's a few times last time was last week. She gave me some Utovian to stop my period and it did I felt great again she then had a look and took some swabs said all was okay up there. But to send me of for a scan I'm book in on Wednesday. My gp only gave my 10days and so I have run out so I'm back on this period again boo it been horrendous over the last few days really big lumps have been coming out I feel like I'm in labour sharp pain all over my body nothing it helping me don't know what's up with me thanks for reading this really long post

Thank you so much

9 Replies

All sounds horrendous laxx1980!!

I would get back the the doctors as soon as possible, they shouldn't be letting you bleed for so long with out further treatment!!


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You need to go back to your GP, ask to be referred to a BSGE centre, to be seen by a specialist, it could very well be endo, or Adenomyosis,

I wish you luck, please keep me informed.


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Thank you I will the bleeding seem to be a bit calmer over night so fingers crossed for the weekend I'll back to gp on Monday cheers xx


It sounds as if you have been badly let down by your gp!

You need to look up your closest endometriosis

Treatment centre and seek help from a specialist.

What area do you live in I can take a look for you?

Once you have found your nearest centre then you need to go to your gp and ask them to refer you to them... (Just so you know they cannot refuse to as its your body your health and its part of the NHS patient choices) so if they try to send you to a general gyni you need to be firm and say that hasn't worked all these years and you've had enough and repeat that you know your rights and that you would like them to refer you to a centre of your choice but you must have this information ready.

Big hugs Sharon xx

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Thanks Sharon I've had a scan to day in one and out lol all look normal for me great..I'd stop my period about 3 days again finally....and all today has done is give me more pain and I'm now spotting wonderful I live in Leeds West Yorkshire thanks x


Unfortunately a scan will not show anything (sorry to be the bearer of bad news) even MRI & CT scans don't always show the extent of damage done and even when it does unless somebody knows what there looking for it can still be missed....

I know as this happened to me!

So if your pain continues go back and be forceful. Xx

Good luck Sharon

I'll private message you your nearest bsge centre. Xx


Thank you Hun I did know about that.. I don't know what I was thinking"" just maybe...""just maybe"" it will be there obvious for everyone to see.. I will push my gp's I have 2 lady's they both really nice And totally different from one another so I'll keep on with my firm but far doc I'm going in Monday again....cheers Sharon and take care xxx

Ta all x


What scan did they do? Did you get a copy

Of any of the images? I have spent many hours studying my own MRI images (which I was told were clear) but on very close inspection you could see that some things were out of place and it's very subtle but things like uterosacral ligaments mine did show some lesions but the sonographer obviously didn't know what they were meant to be looking for!!! I sometimes think that unless it jumps out like a big mass and slaps them round the face its missed! Xx

Good luck sharon xxx

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Just a normal ultrasound outside and in..no did get the pic but she did say she sending them to my gp I could try and ask them? The lady did ask if I'd been diagnosed with PCOS by scan and blood test I said just by scan she said my left ovary look slightly bigger and had to dig for my right which is massive and out of shape anyhow...

I've also had a X-ray of my hips because of pain etc a few months ago those where clear as well Lol I'm glad of but you just feel like you making it all up thanks again Sharon there is on clinic not far away 😊


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