Endometriosis UK

Time to talk

So this is my first blog and to be honest I have no idea where to start! Maybe I should go back to when this all started way back when I was 10 years old.

I've always had stomach pains rather bad since I was around 10 and there was also some spotting around this time too I just figured it was my body preparing me for my first period, but it wasn't until I was 11 that things really started to get bad.

I got my first period not long after I turned 11 and all was fine for that first period however come to period number 2 and that's where the problems start. Pain so bad I would be sick and unable to move, the bleeding would be so heavy that I would have to change pads every 1-2 hours this made my school life pretty awful.

I decided I needed to go to the doctors for the pain, I was prescribed several different pain killers, told I was faking it and that it was all in my head had several scans and blood tests that found nothing. By the age of 12 I was put on the pill so I could have regular periods instead of having one and then not having one for 3 months and told that it would help, all it did for me was give me a period every month apart from that the heaviness and pain were still there and getting worse.

I went to my doctors every month without fail for 9 years before finally being sent to the gynaecologist! 9 years of being told you're too young to go see a gynaecologist, it's IBS, it's all in your head, you'll grow out of it, suffering in silence because no one would listen to me listening to my friends talking to me about how painful their periods were when in actual fact they were having normal periods.

so my consultation came and again more scans showed nothing, that was when they said they would perform a laparoscapy and investigate further. It all happened so quickly 1 week later a letter came through for me with my operation date scheduled for 2 weeks after, it felt like those 2 weeks had flown by and the next thing I knew my operation was here.

I was so nervous and had no idea what to expect but with my mum by my side I was sure I'd get through it. The operation went fine and as I came round I was feeling really good until I had something to drink that's when the sickness kicked badly. What was meant to be a routine day case with me on my way home 2 hours after the operation resorted in me going home 9 hours later when the sickness finally stopped!!

The diagnosis of endometriosis was like a weight being lifted off of my shoulders and when I was told it was only mild and they had lasered it away so I should be pain free until I was at least 30 was great. I was 19 at the time and just happy to know what it was finally. Fast forward 6 months and the pain was back only this time it was worse. I went to see my doctor and we discussed other methods of birth control that could help, the implant, coil, early menopause, and it seemed like the only logical one that would help would be the coil. So I went for my fitting almost 1 year after my lap, and it was during the examination that I was told my endo had returned. I could not believe it, I was refered back to the gynaecologist where more scans were done and my options were again talked about. By this time I was 21 and had met the most amazing supportive man ever truely the love of my life and I would be lost without him. The scan revealed a large cyst on my right ovary, my world came crashing down, did I have more wrong with me than just the endo?

So I went back for my 2nd lap which revealed a large cyst and a large amount of endo, the cyst was removed but there was to much endo so I was told I would need to see the specialist. Maybe it was the anastetic but after the doctor left I burst into tears, i knew that there was a chance they would say that but it hadn't registered in my head that would happen. My partner was amazing that day put me at ease told me it will be ok and just looked after me.

Back to hospital I went and saw the specialist, who told me that due to my endo my bowel had shifted into my womb and it would need to be fixed. I was also told I could have an operation to cut the endo away or I could put up with it, I opted for the operation with no hesitation I needed to get this sorted. So in November 2011 I had my 3rd lap.

The operation went great and it looked as if I would be able to go home the next day. No such luck my temperature, pulse rate and heart rate all decided it was time to be high, I'd caught an infection!

2 days of antibiotics and ecg's later and I was finally going home!!

So here we are now at the age of 22 nearly 3 months after the last lap and the pain is back, have my check up with the specialist in Feb and I can't wait to find out what's going on in there! The pain is bad and not only that it has decided to intensify in my lower back too.

I understand that there is no cure for this but I just hope there will be a way to manage it soon!

2 Replies

Thankyou for sharing this story with us. I can't believe that it goes back as far as being 11 years old for you.. thats really hard and I'm sorry no one listened. I am sure you will discuss pain management with your doctors so other than that I thougth I would add this:

There are a few options for ongoing pain management which are around mindset which have been shown to help for some people

- The expert patient program (http://www.expertpatients.co.uk/)

- Mindfulness meditation (http://www.npr.org/templates/story/story.php?storyId=7654964)

(I am planning on doing mindfulness meditation with yoga soon aswell as alot of exersize, I am hoping that stretching my body out will give my endo less of a chance to attach to my organs/keep my organs as mobile as possible and doing more physical activity will hopefully increase my testosterone/decrease my oestrogen which may help with reducing the amount of endometriosis created... also hopefully improve my immune system so that My body clears up at least some of my retrograde menstration).


Hi i agree thank you for sharing your story. I also knew there was something wrong from about the age of 12 and i am now 46 so i know how you feel. The awareness and sites such as this are invaluable. There was nothing around for me and no one to talk to, i am sure if there was i would have had treatment a lot earlier. I hope this site and others will help you. I did try acupuncture, the point location one which looks at your overall wellbeing and i found it certainly helped. I went to the local acupuncture college and with a referal from my GP i got a reasonable deal to be treated by a student who was of course fully supervised i would recommend giving it ago. I also did circuit training twice a week for three weeks of the month and overall i was managing the pain better than i ever had done. Hope you manage to get some relief soon. X


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