Struggling after diagnosis,needing emotional support and information from those in the know please :(

Hi there everyone,

I'm 21 years old and i was recently diagnosed with having endometrosis in march this year after a diagnostic laparoscopy which i had t fight to get. It confrimed endometriosis patches on my pelvic wall and bladder, and adhesion to my bowel a part of which is adhered to my liver apparently. The patches on my pelvic wall were treated but the larger patch on my bladder can't be as it would damage my bladder. The good news was at last i had a diagnosis, and, i was told fertility wise my ovaries uterus and tubes looked okay at the moment. I really had the operation to find out if my fertility was at immediate risk i can put up with the pain but i needed to know the state of play; if my fertility was a risk and it i was a now or never situation. I would love a family but right now I've not long qualified as a nurse and want to work for a while first save for a mortgage. But if so and thing were already bleak and i was now or never i would've dropped everything and tried for a baby, my partner feeling the same.

I knew something was wrong when i was 16 and my periods were hellish, so painful and heavy, i would be in bed curled up in a ball for the first two days. Sex was extremely sore, so much so i cried ( i feel bad now for my first boyfriend, i think he thought it was his fault!!) and i was very hormonal and tired a lot of the time, i got dizzy spells too. I put up with it all thinking it was just me i hadn't know different right enough. However as time went on and i grew and met my now partner who was a medical student at the time and he told me what i was experiencing wasn't normal and to go to my gp, i did. I took two years from my first my first gp appointment to operation, after lots of sti checks, swabs being sent sent, smear test and medication changes, mirena coil insertion (which HURT, can understand why some people get it in under a general anaethetic) and many re-referrals to gynae the last thing to do was operate.

After the operation and treatment i was thinking i would be 'cured' or feel a lot better I've have a few periods since and i feel no difference, even with my coil i had in before surgery still get my periods, with moderate bleeding its still gets to my limit of pain tolerance even with mefanamic acid and strong co-coddamol, i feel nauseous, grumpy, upset, down and tired. Even now sex if painful and uncomfortable a lot of the time, this kills my partner, i see it in this eyes, he's super supportive (i wouldn't have seeked hep without him!) but he worries about hurting me and my worries with fertility pre-op when and if and the sex have affected our relationship over the years. I've been off work last week as i had a really bad month, went to my gp who told me you'll just get bad months unfortunately, even after treatment and has re-referred me to my gynae consultant. I've already been off work with endometrosis a few times due to pain, lethargy and my operation, i can just have few days a month being a nurse :( Its now really affecting my work and causing me so much stress.

I guess i'm looking for support and advise from others in the same boat and where where to go next. I know there is far more to endometreosis than painful periods. It effects day to day life and i think i need to accept it as a condition that does and will effect me day to day for a long time. Are my symptoms normal? Can i be doing anything more to help myself? What other if any treatment options are available? Im looking to go to a support group in my area but worried i'll make a fool of my self i know i'll get upet talking about how feel in front of other... maybe its what i need to do though. I'm getting more and more emotionally effected as the months go on. There just hasn't been any emotional/psychological support from my doctors i know they are very busy but say you're diagnosed with asthma, you'll go to a special clinic and have a specialist nurse who you can speak with for advice and support. I basically feel left to get on with it and its making me really down.

I'd be grateful for any information you have ladies. Thanks very much.

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  • Also i wonder if my bowels are related to my end, i''m either stuggling to go or going to much and rushing to go. Is this noral are bowel problems common? What can i do to help myself? I gp isn't too concered and aware i take senna and firbrogel if i need but i still and struggling to understand why i get so bloated and constipated throughout the month :(

  • Hi lotty

    I'm sorry you are having such a rough time... I can relate on many levels at the moment.

    I'm 2 years post reg for nursing working in a very hectic community role, too many patients not enough staff and the NHS unable to help yet. It's been crazy. I was diagnosed last year with endo on my left ovary which was found during a lap. (Took me 9 years to get diagnosed) Gynea told me it just fell away. I did not take too much notice of it as I knew it was gone. I was also sterilised as contraception and me don't gel, copper coil made my periods really bad. After the op the coil was removed and it was heaven... periods settled and everything was great.... until February this year. I started getting really bad back ache when ever I do anything on my feet for more than 10 min. Pain in my left ovary (now on the right too), pelvis feels heavy, periods are harsh again, chronic fatigue etc etc...

    It's affected my life on every level... I don't do the things I used to and have gotten myself in a right state... I have had to take a few occasions off work and as a nurse you can appreciate how difficult this is. I broke down this week! Realised with my hectic life and stressful work I had not taken any time to deal with the fact that I have a dabilitaing disease and could be in this boat for a while. I went to my GP as I knew I was getting depressed with it all, could not face work, crying all the time and losing my confidence as a nurse.

    I have been booked off for 3 weeks and put on citalopram. I'm seeing my gynea in 2 weeks time and I have accepted some counselling from occ health.

    My advice is do what ever you feel you need to to get on top of your emotions. Put yourself first for now and make sure you have the support you need... you know yourself and what will help. I wished I had taken time out or been a bit more selfish in the beginning so that I did not get to this stage I'm in now.

    GP has been brilliant, told me off too though.... reminded me that if I go to work like this I'm no good to my patients and if I make a mistake no one will back me up! He demanded I take the full 3 weeks and see him before I go back. Told me to take the painkillers regularly and not worry about dependency yet. He said it was important to control the pain in order to get on top of this...

    I see his point...

    I hope this helps in some way. Xxxx

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