Finally diagnosed and my head's all over the place!

Hi all... Sorry in advance if this is long I just needed somewhere to offload!

I am 23 and have finally been diagnosed with endo after suffering from the same symptoms since I was 10 years old. I also have cysts on my ovaries and fibroids which have altered the shape of my womb. I had a lap 2 weeks ago following which I had a period (although not due one) which was excruciatingly painful. I really didn't think the pain could get any worse but apparently I was wrong. Oddly the pain which has always been in the exact same place for the last 13 years(left lower abdomen) seemed to have moved towards my back/bum...really hard to explain but I'm not sure if the change in the position was what made it more difficult to cope with?

Anyway, my consultant has decided to treat me with injections for 6 months rather than having more surgery as I am just about to finish university.He also wants me to have regular scans to monitor my fibroids as he says it is unusual for someone my age to have them- I have had no explanation of the implications of this. I am feeling extremely overwhelmed with everything. Happy to finally have a diagnosis but terrified that this is something I am stuck with for life and fed up with pain controlling my life. very wary of hormonal treatment as fake menopause does not sound much fun and I'm already rather emotional!

To make everything worse my bf of 6 years is not supporting me as I would have hoped. I lean on him for everything and he is normally fantastic but for some reason he doesn't seem to understand how much this is affecting me- especially emotionally. Despite seeng me in pain he seems to dismiss this and doesn't understand the impact it has on my life. It sounds petty but the fact that he forgets when my consultations are(even though ive been worrying about them) and not asking how I feel or what's happened is really affecting me. I'm wondering how I will ever get him to understand and if I can go through life without his support on this. I think the fact it's a girls problem and that he's read that its quite common makes him feel its not that much of a big deal.

I am also going to have to transfer to the NHS as my parents healthcare will not cover me once I finish uni. I am terrified that after finally talking to someone who understands after years of getting nowhere I will be back to square one.

Sorry that was even longer than I thought it would be! Any general advice would be very much appreciated.

X

5 Replies

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  • I'm an advocate of the hormones, they are the only thing that's helped me! I had to ask for addback hrt, but would have it again in a heartbeat!

    The first period is always terrible, it's because everything is red raw inside.

    I'm sorry about your relationship. Have you given him a book about endo so he understands what it is? The thing is with some people once they know it's not life threatening or cancerous they aren't interested!

    Fibroids are common and 90% of the time they are fine. They will probably shrink with prostap, but rarely they need removing surgically, although a lot of it depends where it's located.

    Good luck x

  • That's reassuring, thank you!

    So far I've only heard negatives so its nice to hear some positives too...and I think we always concentrate on the negatives!

    I think that's going to be my next step. I probably haven't been completely fair on him-I guess it's difficult to understand if you haven't experienced it yourself. My emotions are definitely getting the better of me ATM.

    I think its the fibroid issue that is confusing me the most. My consultant wants to see me in a month before I start the injections to see how it's grown -surely there won't be that much change in that amount of time? I also found it strange that he said he hadn't seen it in someone my age but didn't offer any further explanation. I guess I'm just impatient to get all the info now that I finally have a diagnosis.

    Thanks again for the reassurance- I think sometimes I just need to talk to someone with experience who's a bit more level headed than I'm feeling ATM!

    X

  • Awww your bound to feel this way, we all have at some stage. It's horrible being in pain most of the time, and yes it's normal for the endo to move areas of pain. The endo is anywhere it can grow and especially in the pouches between our bladder and bowels, that may well explain the back pain as that's where the back wall of your womb is located. I feel at times my partner isn't as supportive and feel as though I'm always in pain, we have to remember that they go through it too, worrying about us etc. remember the positives, you're being looked after by the hospital and something is being done to help you! Good luck Hun someone is always here on these pages if you ever need it ;0) xx

  • Hello :)

    I'm 23 and have been just diagnosed with endo, polycystic overlies and some fibroid tissue, so please don't think you're the only one! You're not alone in this :)

    I'm having hormone treatment, had my first lap a month ago and am back to backing the combined pill. As of yet I can't see much change except the pain which I had on my period which was paralysing, is non existent.

    I think we should be careful, a lot of the posts you will read on here are from poor women with very developed and excruciating endo. My full heart is with them but it gets me worried and scared for the future. For me I am determined to keep my life as happy and full as possible. Even though endo puts things in our path we must be as positive as possible. Explain to you're friends and family - I've even found if I've had to mention to stranger ie. receptionists at surgeries they offer so much support.

    Me and my bf went through some very hard times before I was diagnosed because my emotions were like a rollercoaster and also I was less sexually stimulated. But through talking openly (he found this forum for me) and being truthful he understands. What's important however is that it will be hard for him as he might feel frustrated there's nothing he can do. Reassure him that he can comfort you and talk to you. If you can, unload your anxieties with a group of friends so he doesn't feel like he's the only thing holding you up.

    Finally, sorry for writing so much! Be strong :) like you, I'm at university doing a masters. Utilise the counselling service, talk to your tutor, women all over the world have endometriosis. There are days when I don't know how I'll be able to achieve my dreams and get bitter towards those with endless energy but I always remember my strength and determination. You can achieve. Endo is like carrying a rock, it's heavy to carry but you can still move forward and everyone has their own pace, doesn't mean your goal disappears.

    Best wishes! X

  • Hi, thanks for replying. It's a great relief to know there are other people that know how I feel!

    I'm unable to use the combined pill so I'm currently on mini pill and having injections in another months time. I'm glad to hear you have found some relief!

    I'm glad you feel the same... I am so grateful to the older women for sharing their stories and its good to know that people are strong enough to get through- but it terrifies me to think that I will still be having the same problems in the future. My main worries are how it will affect me career wise after all my time at uni and of course family wise too.(realistically I have been told I have 4 years to have children)

    My bf has been fantastic before diagnosis- I have not be able to have sex as normal for the past four years so yes I think I probably don't give him enough credit. I just guess for my friends and family a diagnosis seems like everything sorted whereas for me it's almost more scary than not knowing! After having a very long chat with him last night I get the impression he didn't want to ask too much for fear of upsetting me- I think I may have been too wrapped up in myself to consider how it was affecting him. Hopefully now we will be able to help each other :)

    I am very aware that there are women who have it much worse than I do which also makes me feel guilty for moaning but sometimes I just have to let everything out!

    Thank you for sharing, your honesty and hope is inspiring!

    X

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