Confused..seeking advice: Hey...Basically I... - Endometriosis UK

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Confused..seeking advice

liv88888 profile image
4 Replies

Hey...Basically I'm 20 and in my final year at university and struggling more than ever with the pain I get when on my period (and in the build up to it) - I'm essentially trying to look for some answers.

I came on my period first when I was about 12. However the pain didn't get bad until I was about 15/16. I often skip uni because of the pain and feel embarrassed when explaining why as I feel like people just think i'm being dramatic so I don't really talk about it. My doctors have been useless, I've tried 7 different contraceptive pills and I'm now on the implant (this has reduced the heaviness and I have periods less frequently) - however without fail I still always get the crippling monthly pain even if I don't have a physical period. Each time I visit the doctors they prescribe me a new form of painkillers and send me on my way. My parents are really supportive (particularly my mum she suffered with a lot of pain when she was younger and has since had a hysterectomy) and after lots of pushing I have now been referred to a consultant -I'm hoping I can get a bit more feedback this time around. Sometimes I get paranoid that it's just me and that I am being dramatic and that the pain I feel is just the same pain anyone else gets for their period. I often spot and do suffer pain throughout the month - however its worse than ever/more frequent pains around the time I should be coming on my period. I get severe lower back pain -making it painful to walk around and do things. The abdominal/vaginal pain is awful - this may sound crazy but it feels how I imagine a really strong and painful contraction to be. (Hopefully some of you can relate to that???) - even the way the pain comes and goes in waves throughout the day and night. I find that when the pain comes all I can focus on is breathing through that moment and everything else around it stops. This is hard when out and about - you don't want people to think you are being dramatic etc so I find myself trying to conceal the pain with all my power despite just wanting to scream. Consequently I try stay in when I know it's bad because I can't face the humiliation.

I've done lots of reading on research on my symptoms and it appears that Endometriosis may be the closest answer? I just wondered what you guys thought based on what i've written and whether you have any advice?

Thank you for reading this :)

Liv

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4 Replies
Kirstyjane profile image
Kirstyjane

My pain is not as intense as yours but follows a very similar pattern. I too did lots of research as my GP though I had a gastrointestinal problem. I ended up going private in order to get a faster diagnosis. After that you can go back to the NHS for treatment. I would highly recommend this route!! I am now having a laparoscopy (diagnostic with excision if anything found) at the end of October.

Look up Lindle on this site, she has some excellent posts and one that tells you how to find your nearest centre of excellence.

Good luck

Kirsty x

JuliaRosie profile image
JuliaRosie

Hi Liv,

I'm 21 and in my last year of uni too and I can really relate to your pain! Mine too, feels just like waves of painful contractions and sometimes sharp shooting pains which is agony. I've always imagined it to be a similar pain to giving birth as it sounds just like it, when my sisters who have had children, describe it to me.

I have been prescribed many different contraceptions and pain killers too until last year I finally got to see a gynaecologist at the hospital to have further tests and an ultrasound. This was nearly a year ago now and they still haven't gone through with giving me a any answers or a laparoscopy (this is the only way to be diagnosed officially with endometriosis). You've really got to make a fuss to get answers. One of the gynaecologists who pressed on my stomach said that I didn't scream enough!! Even though it really killed and I had to fight back the tears because I felt embarrassed.

Anyway, last year I applied for an extension for my project to allow me to go to all my appointments, they didn't even ask me what I was attending appointments for. Please try not to feel embarrassed because women should not be in this much pain, it's deffinately not normal! It probably would be best if you can go private like KirstyJane said although if you can't afford it, try to go to a specialist in endometriosis, as they know exactly what they are looking for.

Hope it goes well with the consultant!

Julia xx

sharon1980 profile image
sharon1980

I would suggest from the pain you having you go to your GP and simply say out loud I believe I have endometriosis , the cramping pain , sharp shooting pains and all around your period it is just to similar to endo not to have it checked ....

Be firm ..... I was treated for urine infections and constipation for 12 months felt like a tit going into the doctors all the time to be told such things in the end I went in and refused to listen to anything they suggested and advised I have endo I need help ...im now being treated for it and waiting to gyne...

You know your body and your usually right so get to that GP ..... on a positive the pain is similar to contractions but endo is a million times worse so don't be put of having a baby , id give birth 10 times over before having endo x

liv88888 profile image
liv88888

Thanks ladies for all your kind, helpful comments! Yes, going private is something my family and I have discussed and will probably end up going down the route of. Really appreciate the support - it's just reassuring to know that other people are going through the same thing and that you're not crazy! For the first time I'm getting a bit of hope now that I know that there could be an actual diagnosis.

Xxx

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