Feeling alone and lost

Hi, this is my first post.

After a 9 year struggle of wondering what was wrong with me, searching the internet, trying different medications and begging my GP to help me, I finally know whats wrong ... so now what?

I spent so long fighting for an answer and now I have one I don't really know how to handle it or what to do with myself. Part of me is relieved that I finally have a diagnosis and is ready to take on this new chapter of my life and get all the help I can but the other half as been hit by the realisation that something really was wrong with me, it wasn't in my head or just the usual monthly period pains, I have Endometriosis grade 3.

During my battle to find out what was wrong I became a bit detached from the situation, like all the fighting would lead to nothing and all the tests would come back normal, this is what I expected so never really saw an end to this cycle. When I told my GP about Endo it was a long shot and I never really thought I'd get anywhere so when I was told that the possibility of me having Endo was highly likely I suddenly wanted to stop all appointments and pretend as if the situation wasn't happening.

To wake up after surgery and be told I do have this disease has left me feeling numb. I've reached the end of my battle, I know whats wrong but its not a good outcome as Endo is a battle in itself and has its own complications.

I don't know if any of this has made sense but I suppose to sum up how I feel is bitter sweet. I did my research, I told my GP I thought I had Endo and I asked for surgery, for me to get a diagnosis for myself has taken all my strength and I'm proud of myself for fighting so hard but now I am faced with a new fight and knowing I have this for the rest of my life scares me and I don't know how I will be able to summon the strength to start this new battle.

13 Replies

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  • You're not alone, the diagnosis can really hit us hard, even when we think we have it.

    I think it's the certainty of it that scares us, the confirmation that we where right all along, and knowing we have many more steps to take along the road.

    The confirmation is positive though, now you can start to path to treating it. It's taken a long time for you to to this point, and now you can move forward.

    Did they treat you at the same time?

    Big hugs, you are not alone, we are all here for you,anytime you need us xxx

  • Thank you !!

    You explained it better than I did.

    Yes, it was diathermised.

    The Endo wasn't on my Ovaries but I have been told that my tubes are inflamed and thickened and that I have low reserve. This is what has me dreading the next few months to see what, if anything, can be done.

    While having my Laparoscopy I also had a Hysteroscopy and had the Mirena fitted.

  • I'm sure of the other ladies have been through that and can help, but you can also call the Endo UK helpline for support.

    It's hard to come to terms with, but you will get there and at least now you can research into your condition and get the treatment you need xxx

  • I will do, thank you xx

  • You should absolutely feel so proud. You have been a wonderful self advocate.

    I feel similar to you. Now I know, I'm like "Well, now what?" I feel like the only thing I have control over in regards to battling this disease is what I put in my mouth. I'm trying to overhaul my diet by removing inflammatory foods which will help reduce my symptoms and will slow the spread of the endo. Aside from that, it's almost just a 'wait and see' approach, and I hate it.

  • I feel so relieved to know I'm not alone in feeling this way.

    Yes, my diet will be changing now too. I've already cut quite a lot out and have been Vegan for 2years. Hopefully with more research I'll find natural remedies that help me.

  • Know how this feels.

    I've known for probably over 22yrs ive had endo. Had wasted surgeries in that time under nhs where only adhesions were found.

    I found out i was covered to go private under my partners healthcare, so i did.

    2 months on i have had endo excision surgery to Pouch of douglas, bladder, ligaments and cysts in ovaries.

    I have since found out i also have adenomyosis. Im so gutted. I did not want any further surgery and finally thought this was the end of it all.

    Endo has taken so much away from me over the years . I lost a baby through an ectopic, infertility from there, years of wasted docs/a&e/hospital admissions/surgery/depression/PAIN and all for nothing. So called specialists making me feel stupid as there was 'nothing wrong with me'. It has affected my work life also, due to sickness. Relationships have also broken down as you certainly find out who your true friends are when you are fighting an inivisible disease that nobody believes.

    Unfortunately its all too common and this needs ro change.

    Very best of luck

    X

  • I'm so sorry that you have gone through this <3

    This is now my worry going forward that Endo will ruin a chance of me having a baby which is something I desperately want.

    I've been with my boyfriend for just over a year and I feel this situation has put a strain on things. We are in very different places when it comes to children, the sooner the better for me but my boyfriend isn't ready yet and that's totally fine if I didn't feel like a time bomb.

    I've been told I should freeze my eggs but I'm only 23, it's a big risk to take and it's not cheap either so I'm feeling quite torn and mentally drained from trying to figure out what is best.

  • I was kind of the same. nhs always said to me that i could apply for nhs funding for ivf once my gynae issues were sorted. Obviously that never happened with them and once i had my last lap at the age of 33 which came back negative for endo i thought it just must be all in my head so i would go back to gp and ask to be put on waiting list. It was then i was told i was too old for funding!

    I srumbled across info on egg sharing and quickly realised it was my only chance. Luckily i had just reunited with my ex who id split up from 7yrs before that. He understood that if we stayed together, this would be his only chance too. So we went for it and my miracle arrived after the one and only chance at ivf i could of ever had. The cut off age for egg share was 33 and i found out i was pregnant 2 wks after ny 34th bday! To say i got through by the skin of my teeth is an understatement. I think to freeze eggs its about £500 for a year (if i remember right!?)

    Really feel for you, im so lucky to have my little girl, i really hope you are as lucky xx

  • I'm so happy you were able to have a baby, especially after such a struggle !!

    It's been quite overwhelming when reading all the information on IVF. I just wish I had more conformation from my boyfriend about what he wants from our relationship so I know where I stand.

    We've had long talks but it's hard for him as I'm his first girlfriend so he's still learning how relationships work and children aren't on his mind at all right now.

    I'm due to have another test at the end of the month to see if my eggs have decreased any more. I currently have an ovarian reserve level of 17.

  • I cant even remember what that means (the egg reserve bit?) Its hard to get your head around the treatment but once you get gping its pretry straight forward. Things went a bit wrong for me aa i over stimulated to the drugs amd ended up in hospital. I never thought my pregnancy was here to stay. If i can grt there, anyone can. I sincerely hope you get your dream. Miracles do happen. Mine is running around like a loon right now!

    If you need any more questions or help with it, pls feel free to message me x

  • I'm not too sure myself as it wasn't properly explained by my GP or Gynaecologist :'(

    Thank you, I hope so too xx

  • Hello. I know exactly how you feel. I have just been diagnosed with stage 4 and although I suspected I had it it is still a shock to know for sure. You are not alone but I know it does feel lonely and as though the road ahead is long and uncertain (that's how I feel) :-(

    You said you were vegan. I am too and am looking into diet to help symptoms so maybe we can share some ideas?

    Take care xx

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