Endometriosis UK
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I'm new, would really appreciate some advice :)

Hi,

I just found this forum and would be grateful for any advice! I am 26 and have had ongoing period problems for years, with doctors being pretty unhelpful.

Sorry in advance for the long post, but here is the background to my issues...

My mum took me to the doctor when I was about 13-14 (started periods at 11) as I would have very irregular periods (sometimes 2 a year) and other symptoms such as excessive facial hair growth. They did a blood test and the consensus seemed to be that I had PCOS although they told me very little about what this actually meant or what I should I about it. Anyway, for several years I managed it through diet/horribly painful electrolysis for the excess hair/supplements including Magnus Castus and Saw Palmetto, and even acupuncture. After several years of monthly electrolysis and on and off laser treatment I got the excess hair situation more or less under control, but the periods stayed quite irregular, the most regular they got was ever 36-44 days at one point I believe.

When I reached about 18 I started to experience much more severe period pain, to the point that I nearly fainted, one time my mum called a practice nurse as she didn't know why the hell I was in so much pain, and the nurse thought I was having a miscarriage from my symptoms (I wasn't). That pain persisted, and I would have to take a day off from school/university every month when it was at its worst as it was just too much to deal with.

I finally decided enough was enough and went on the pill when I was 20. I was put on Marvelon which was meant to be a good one for PCOS sufferers but is now seen as one of the higher risk pills for DVT, I believe. Anyway, that pill did help and my pain reduced considerably and my periods became regular and more easily managed.

That lasted until maybe two years ago. At that point I started to develop other pain related symptoms which have increased as time has gone by (I am still on Marvelon). Symptoms including; severe muscular pain for example when I'm sitting on the toilet and I try to lift my foot a little to put a new pair of pants on - severe deep pain somewhere around my vagina/bit where my inner leg meets my body. I can also experience this when I try to climb a staircase. The worst symptom - sorry in advance for TMI - which is really horrible, is I get a severe pain when I try to go to the toilet (no 2). This is not because of constipation, and I do not get this pain or have difficulty at any other time of the month, but when I have a period and I try to use the toilet the act of pushing down is so severely painful that I sometimes can't actually successfully go because I can't push through the muscular pain (I would say the source of the pain is deep inside somewhere in between my vagina and bowel). My general period pain is much worse now than it used to be as well.

I don't know what is wrong with me, or if this is something that a lot of people just deal with, and I am just being a bit pathetic. I wondered if maybe I could have endometriosis as I read about the possibility of bowel adhesions and maybe that could be the source of my pain. I also would really like to find something to take away my pain and/or my periods altogether - my friend recommended Cerazette which totally stopped her periods but I don't know what people's experiences are on taking this or other things with PCOS/endo or with regards to pain levels. I do not know a lot about endometriosis but I think you can't know if you have it without surgery which sounds really scary, and even if it turned out I did, can they even do anything to help? Am I just stuck with this? Do my symptoms sound like it could be endo?

I just don't know what to do, I tried to talk to my doctor and he just shrugged it off. I hate and dread this pain and I just don't know what to do. Please help!

Thank you so much,

Amy xx

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In addition to my post, I would like to add I have also had a history of finding sex to be quite uncomfortable (have actually used external vibration not just for pleasure but as a way to try and distract from the discomfort of penetration). This was with an average sized partner. I have also found smear tests to be severely painful and caused bleeding for days afterwards, in case that has any bearing on anything! x

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Hi Amy, I think you are right and may have Endometriosis, I have PCOS AS WELL AS ENDO AND ADENOMYOSIS, I am sorry to say but you really need to get a referral to a specialist and get diagnosed, I know the sound of surgery is scary but believe me things are only going to get worse, there is no none cure for Endometriosis, treatment like the pill only mask the symptoms, I am currently at stage 4 Endometriosis and I get the same pain when going to the toilet, that is because my colon is fused together with my left ovary and cyst, I don't mean to scare you but you are still only young and if you are looking to have children in the future you really need to start getting help now, I am 33yrs old and have been trying for over 6 years to conceive, I am currently on my cycle now and the pain is so bad all I can think about is wanting to die, please go back to your gp and asked to be referred, also please take a look on Endometriosis uk website and learn as much as you can before seeing your go, best of luck xx

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Hi Nikki, Thanks so much for your message.. I am really scared, I felt like if I could put up with it then maybe it wouldn't have to affect me that much, but I have been reading around and it sounds like it is worse to leave it than to get it sorted sooner...I am going to go to my doctor to ask to get it investigated but I am terrified of what they will find and what it will mean for me in the future. I am sorry to hear you are struggling to conceive and are in a lot of pain :( xx

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Don't worry until you know what you are dealing with and remember you are not on ur own, message me any time xx

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Thank you so much, need to register with a doctor as I just moved to a new area and I found out there is an Endometriosis centre in the nearby city so if I have to see a specialist at least I know there's somewhere I can go not too far away x

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That's brilliant x

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