Another newbie x

Hi everyone,

I already feel better joining this site! A bit of a babble coming your way but maybe my story will connect to some of you in some way :)

All my life I have suffered from the most horrendous periods which I started at 11 years old. I used to be physically sick from the pain and would have to take time off school which I hated. The volume of blood I used to lose I knew, even as a child, was not normal. But after GP after GP telling me and my mother I was just one of the 'unlucky' ones, I learnt to live with it!

I went on the combined pill at 16 which appeared to sort of help but I still would have pain and at least 7 days of heavy bleeding.

For the past 3-4 years I have been on no contraception (following trying the implant for 3 years) and noticed my periods were starting to be the old painful ones again. I had also been diagnosed with IBS and suffered from severe back pain and hip pain regularly. But again, I just dealt with it and shrugged my shoulders of it all.

At the end of July this year, I awoke on a Sunday in the most horrific pain (so much so I remember sitting naked in a cold shower trying to calm down). I deal with pain well but this was something else. My fiance took me in a cab to the nearest hospital (which was St Mary's in London - did anyone else have treatment here?) and I was misdiagnosed with a potential kidney stone. Hooked up to morphine and god knows what else the pain subsided after continual tossing, turning and panting. I felt ready to go home!

After a long wait, my scan results came back. No stone, but a large tumour/cyst (12cm) in my left ovary. Now, I am sure a lot of you have experienced this news too but GOD, they could break it to you a bit more calmly - the doctor nearly cried when she told me! I was absolutely devastated and incredibly scared...

Anyway, I was fast tracked into an op that week (I went under 5 days later which was incredible for the NHS and I cannot thank St Mary's enough). The severe pain I had been in had been my ovary twisting on itself and they were worried it would happen again. The cyst was removed after a 2 hour op (there were complications) and they also discovered endo on my uterus. Oddly, this was what messed my head up the most.

All these questions flood into your head: Will I be able to have children? Is there a cure? What will happen to me?

I was over the moon to keep my ovary (it was the first thing I asked when I came round, drugged up and delirious) but the endo was what was upsetting me so much.

I had great treatment, but I have to say the information and guidance was awful. I read up as much as I could and was shocked that nothing was explained to me following me op.

So here I am.

If anyone can give any information or detail on their experience I would love to know. I am about to start back on the combined pill and have been advised to take 6 months worth back to back (no breaks) - has anyone else done this? They said this should help in some way (how, I do not know).

Also, has anyone tried the endo diet and anti-inflammatory diets? I am currently trying to cut down on diary and red meat.

Also, how are people coping mentally? Since my op I have tried to have sex with my partner but have ended up embarassingly crying after... it is BIZARRE and I cannot explain it.

I am getting married next year (May) and the thought of this chronic illness affecting my chance of having children breaks my heart - we had not planned to have kids so soon but I now have this urge to try as soon as we exchange vows.

Much love,

Bx

5 Replies

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  • Hey B.

    Thanks for sharing your story. Atleast now you know what causes the pain!

    Did they remove the endo? And have you had your follow up appointment.

    I think most on here agree that the info given after diagnosis is pretty much non exsistant. However to some extent I can see why. The disease affects people in so many dfferent ways and treatments help others and to some makes things ten times worse so it is hard to have a clear plan.

    I am currently waiting for my 2nd lap. My first ended up just diagnosing as it was much worse than originally thought and I will need a bowel prep before hand which I hadn't the first time. It reay upset me waking up to find out I had it but nothing was done. It put me in a nervous state, wondering how much will grow in the time before my next lap? I'm waiting for my follow up to discuss but right now I'm tricycling my pill. The back to back works for some but for me...I'm not so sure. Instead of an intense period I get more of a build up of pain, and that full ache constitantly from about the second pill. So not sure what's worse! Also my body doesn't seem to like the amount of hormones and then a break... The break leaves me with extreme hot flushes where at least once I faint! Rather annoying.

    At the moment I'm dealing with my pain the natural way for the most part. Anti inflam the whole way. Caffeine, alcohol and bread are enemies. (Bread makes my GERD painful and the other two cause pain for my bladder) so I don't consume any apart from a relapse cup of tea which sometimes can't be helped! There is a website called deliciouslyella about a lady who beat her condition with nutrition. She has the best recipes! She doesn't eat meat so most of the time I add in fish or chicken..I don't eat other meat.

    As for the children situation. I tend not to bring it up on here. It's hard not to get worried about it and on this forum there are some of the worst cases and they can't have children. You have to think that in reality that that is a small minority and there are thousands of women with endo that have conceived!

    Hope this helps and feel free to send me a message if you want to ask me anything more

    Faye xx

  • Hi, I like you have suffered with painful periods since a teenager although bizarrely never long or particularly heavy. I was diagnosed with stage 4 endo in 2013 at the age of 39 I had abnormal brown bleeding which turned into constant red bleeding with massive clots so was sent for a scan which discovered cysts/tumours on my ovaries. First lap ended up being 20 mins as surgeon said "you need a better surgeon than me, if I attempt that I will make it worse its a mess in there!" Everything as stuck together including my ovaries. A month later I had a second op and had my left ovary and Fallopian tube removed. Small patches were left behind 1 on my right ovary and other behind my womb as endo is sticking the womb to my rectum. I also had the Merina inserted. So the point of my reply is as you can tell it has been a mess in there for many many years and yet I have two children both conceived naturally. Now I won't lie we did try for 6 years for a third but obviously things had got too messed up in there! So the drs are amazed that I have two children saying that if truth be known they understand very little about how it effects fertility. Some ladies with very small amounts of endo struggle to concieve and others have no problems. I have also been told that as my womb is healthy I would have had a high success rate at IVF. However having two children we decided against the cost as still no guarantees and would feel like the boys would miss out on holidays etc and potentially not have another sibling either. I hope this gives you some reassurance that yes endo can and does effect fertility for many but for some unknown reason not all. If you are affected then there are options still with no guarantees but options to be explored. I think the best thing I have learned is that endo effects each person differently and although we can all share our experiences our bodies will behave in its own unique way xxxx good luck

  • hang in newbie......things will get better....... iam a newbie too i had a complete hys and they found i had severe endo so the op went from3 hrs to 9hrs had to have a stent placed .....i had two gyno's not even wanting to do hys........as iam 50 BUT ive been in pain for years because i have a L5 disc issue they put it all down to back probs..........at the moment ifeel adverage its been 5 weeks stent still in until another week its painful like period pains.......yuk.......iam still mad that for 8 yrs no one even mentioned endo.....like i said to you HANGIN THERE?.................SIMI...x

  • hang in newbie......things will get better....... iam a newbie too i had a complete hys and they found i had severe endo so the op went from3 hrs to 9hrs had to have a stent placed .....i had two gyno's not even wanting to do hys........as iam 50 BUT ive been in pain for years because i have a L5 disc issue they put it all down to back probs..........at the moment ifeel adverage its been 5 weeks stent still in until another week its painful like period pains.......yuk.......iam still mad that for 8 yrs no one even mentioned endo.....like i said to you HANGIN THERE?.................SIMI...x

  • hang in newbie......things will get better....... iam a newbie too i had a complete hys and they found i had severe endo so the op went from3 hrs to 9hrs had to have a stent placed .....i had two gyno's not even wanting to do hys........as iam 50 BUT ive been in pain for years because i have a L5 disc issue they put it all down to back probs..........at the moment ifeel adverage its been 5 weeks stent still in until another week its painful like period pains.......yuk.......iam still mad that for 8 yrs no one even mentioned endo.....like i said to you HANGIN THERE?.................SIMI...x

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