My story x: This is my first time on this... - Endometriosis UK

Endometriosis UK

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My story x

BellaBoe profile image
8 Replies

This is my first time on this website, and my story is rather long but I hope you wont mind.

I'm 23 and have been suffering with my periods since I started them in 2005 when I was 15, they were very irregular, from only having them every three months to bleeding for 28 days having a week off and then coming back on for another week. I asked my mum if this was normal and she said well because you have only just started having periods it is quite normal. so she didn't think there was anything to worry about so neither did I. However my periods were very painful and changed in colour etc. so due to getting a boyfriend my mum decided to put me on the pill one; to stop me from getting pregnant and two also make my periods more regular and less painful.

I went onto microgon 30, but I ended up severely bloated to the point where my friends thought I was 6 months pregnant put on loads of weight but the pain didn't ease. so in the end I went on cilest and was on it till 2007 with the same symptoms as before just less weight gain, but every month id be severely bloated and my moods were unimaginable, I can quite easily say I was evil. I then tried the injection but produced milk in my breasts so went back to cilest same problems again, and then finally in 2011 I went on the implant and this stopped my periods for a while but when I did have a period it would be really dark in colour and last for half hour to 14 days plus.

All within this time from 15 I have been having crippling pains shooting from my lower left side lower right side and lower back (tailbone) down to my genitals, which leave me breathless and sucking air through my teeth to try manage the pain when it happens.

I also find it very difficult during intercourse because it is so painful I have to ask my boyfriend to stop and now I'm really put off having sex cause I'm scared it will hurt which luckily isn't affecting our relationship at the moment but my moods (depression and fatigue) are already affecting our relationship so in time if I'm too scared to have sex I cannot see our relationship lasting.

It was only after becoming a student nurse and being on placement one night that the pain was that excruciating that my mentor said 'you really need to get that looked into' as I was curled over with pain.

A few years before this I had contacted my GP about the pain and they thought I might have pelvic inflammatory disease, I was sent for a scan which showed nothing and they left it at that, yet I was still in a lot of pain but I just thought maybe this is what's normal for me.

But when I was on placement and the pain was the worst id had up until that point I decided to go back to my GP where I went for another scan, which this time showed up that I have polycystic ovaries, when I had my follow up with my GP she told me that she didn't believe that the cysts would be causing my pain so referred me to a gynaecologist, the gynaecologist told me that he believes I have endometriosis and that I have had it for a very long time which I'm now having a laparoscopy tomorrow to hopefully know what's finally going on and if it is endometriosis.

I am worried about if I do have endometriosis, because my auntie has it too and the sticky substance it can cause has stuck her fallopian tubes shut and made her infertile. and I'm worried that if I have had it for a long time which my gynaecologist believes I have that I'm already infertile and that my long term goal of becoming a midwife will have to be scrapped because how could I have a career of watching women give birth to their beautiful babies, knowing that it is something I will never do. Also how can I let my boyfriend go without a child of his own, although there is fostering and Adoption, it wouldn't be mine or his and it is a very long process to adopt a child and I don't think I could suffer the heartache... I guess I will have all the answers and decisions to make from tomorrow.

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BellaBoe
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8 Replies
miniminx13 profile image
miniminx13

Hi Bella,

Sorry to hear of your pain, I do hope you get some answers tomorrow.

I have had Endo for 10 years confirmed in 2005, since then i have had 4 laps and a subtotal Hysterectomy ( you can read my blog for my story ).

your symptoms sound very much like Endo to me (sorry to say) I am not a doctor but have lived with endo long enough to know the signs. please dont let any medical staff tell you its in your head, you know your body hun better than anyone.

I wish you all the best for tomorrow and hope you get answers you need. please let us know how you get on xxxx Debbie xx

BellaBoe profile image
BellaBoe

Thank you soo much, and yeah my gut is telling me it is too, I'm just wanting to know about my fertility more than anything, but as soon as I'm ready I'll post to let you know how I'm doing and what the results are.

Xxx

miniminx13 profile image
miniminx13 in reply toBellaBoe

Hi Bella

How did it go today ? hope you got the answers you wanted hun x thinking of you x

happyjackandjoan profile image
happyjackandjoan in reply toBellaBoe

has hospital look in side hir

Hi Bella, I had Endo for a long time before it was diagnosed, probably from about 1998. I also suffered from polycystic overies since 1993 and was told that I couldn't conceive without any help. I put children to the back of my mind because of this but when I was 39 I decided to try. I came off the pill and two months later conceived. My little girl is now 5 and I am 45. My Endo has come back with a vengeance and I am having a laproscapy in two weeks. I just wanted to let you know that after years of suffering the same as you, and being told I couldn't conceive, I did. Don't give up and good luck!! Xx

chococlaire1982 profile image
chococlaire1982

Good luck for tomorrow. I have pcos diagnosed 2003 and diagnosed with endo in 2010 but have had it for a long time just not diagnosed. i Was told In dec 2010 i prob wouldn't conceive without help but I came of the pill and gave it a try and conceived 2011 i had a healthy girl born jan 2012. sorry to say but your story/pain/symtoms sounds alot like mine :(

BellaBoe profile image
BellaBoe

Hello it was today I had my laparoscopy, I have been diagnosed with Endo today and pcos about two months ago, seems our stories are matching. I'm abit bummed out but least I know what's going on, I got early stages of Endo, there is an update on my profile. If you want to have a read. Thanks for messaging me xx

happyjackandjoan profile image
happyjackandjoan

he man how would hell he know

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