Severe endo

Hello everyone! I have just joined and wanted to share my story and hear anyone else's, I'm Lucy, 28, no children and was finally diagnosed with severe endo two weeks ago!

Story starts 10 months ago I came off the only pill that controlled my horrendous period called *qlaira* I decided after being on the pill and so many others from the age 13 it was time to give my body a break as me and my boyfriend of 6 years would like a baby soon, and as you can all guess it started from there, I woke up one morning in August in a pool of my own blood and light headed, made my way to the bathroom and that was last thing I fully remember in and out of consciousness. Two days later they realised i had abscesses and cysts everywhere in my Fallopian tubes and all over my ovaries and had septicaemia. They operated and removed the cysts and abscesses, came home few days later and took me a couple of month to fully heal and get back to work. 2 months after I came on a horrendous period, sickness and the pain, I can't describe, doctors gave me butrans morphine patches as I couldn't keep any tablets down, then went away back to work mum who is a nurse at a private hospital got me an appt with a gyny surgeon who does nhs patients, he went through all my symptoms and wanted me to go for an MRI scan, few weeks later my results came back, he said he could see something and wanted to do a laproscopy asap, so my appt was booked for 7/1/15, in that time I came on my period again, few days before Christmas eve, straight to A&E again, and on to the ward, pain relief through IV. I begged to go home Christmas Eve night and they allowed as I was already coming back for the operation. Had my operation couple weeks ago and his first words to me while I was recovering was, no wonder you've been such a mess, and in so much pain, you have severe endometriosis and everything is stuck together, natural conceiving will be difficult. I had my post op appt yesterday and he's put me on zoladex for the next six months, if anyone has any advice or stories of getting pregnant after this treatment please let me know, I know no one with this disease and feel quite lonely, no one knows how it all feels unless you suffer yourself I believe, it's an invisable disease to everyone else, many thanks.

8 Replies

  • Hi I'm Lucy & I'm also 28!! I have just had a laparoscopy in December and results came back yesterday as moderate endometriosis!! I have been trying for my second baby for two years & now have just started Ivf preceding as we have to go privately. I feel for you so much, this is the most awful thing in my world, I am constantly ill and feel my immunity has been lowered in the last few years due to this. Hope your ok x x x

  • Hello Lucy, thankyou for replying. If you don't mind me asking is this your first lot of ivf or have you had it before? Because my endo is so severe I think and so do they, a natural conception is just a dream long gone by now, I think after the six months of zoladex I'll be having ivf, I feel your pain too, it's such a horrible disease that won't go away, and it's not fair for women who don't want a hysterectomy yet and want kids, mine has spread to my bowels too, just too add to it :( the most natural thing for a woman is to have children and now I'm terrified I won't have them, and to be honest I do feel such a disappointment to myself and my boyfriend, the usual case, family members and friends have all become pregnant, I just feel left behind the line and they have all crossed, and I'm watching their happiness. Just a sad day for me today x

  • You poor poor thing. I also found out in Nov that I have stage 4 endometriosis and we are currently researching clinics to start IVF. Very luckily I have very little pain but my Fallopian tubes have been very damaged by the endo - I had a second lap in December to cauterise them both as they believe that the liquid within my swollen tubes would affect the success of IVF.

    I know how desvasated you must feel but you are NOT a disappointment or a failure. This is not your fault, it's just unfortunately the hand you've been dealt. You'll need to take some time to get your head round this, but you will and all of the lovely ladies on the forum will help. When I was diagnosed and devasted a wonderful woman on here helped me loads - she's been through the same thing as me and she's now pregnant!

    You are still young, you have options. Give yourself time. PM me if you want to ask any questions x

  • Thankyou very much! I think I'll come round to it too soon, think I'm still in shock to be honest, I missed summer, missed Christmas, I feel like I'm in a bubble or watching someone else's life, thankyou for the support, I would love to keep in touch and ask questions thankyou again very much xx

  • Of course, no problems. Should also say that there is another forum called the Infertility Network UK (also on Health Unlocked) when you are ready to start thinking about next steps x

  • Hi Lucy,

    I am in a really similar situation tp you, 28 and found out I have endometreosis just 3 months ago. For me the diagnosis happened very quickly which in a way was a good thing but on the other hand was really hard to come to terms with as for the last 28 years I had no clue anything was wrong. I am quite lucky and don't really suffer the main symptoms of endo but only discovered I had it after a cyst on my ovary twisted and left me hospitalised.

    Its really scary thinking about what the future may hold and I find the whole fertility thing the most upsetting and I totally understand how you feel. I felt quite desperate for the first two months which put a lot of pressure on my relationship - I have since tried to be more calm about it which is helping.

    I am in a long term relationship and like you all my friends are having babies which is lovely but makes me feel sad that I may not be able to. I started to worry that we should have started ttc years ago and felt angry at myself for putting it off. The only thing I can say is just take each day as it comes and try not to let it consume your life. It plays on my mind all day that I may not be able to have a baby and it is so upsetting - but the fact is - I don't know what is possible - just like you don't. So I guess the best thing to do is stay positive. There are so many options available to people who may have difficulty in conceiving naturally so try and find some comfort in that. I wish you lots of luck and best wishes. x

  • Hello, wow! Quite similar ain't we? Yeh it's the not knowing that hurts the most, I'm waiting for an appt at a new clinic to see a specialist to see where i go from here, just hate having my head in the sand! It's just limbo, but I will try to remain positive too, thankyou for your kind words xx

  • Hi, I'm sorry this has happened, I am in teh same boat. My gyn consultant told me I'd be best going straight to IVF.

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