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It's not getting any easier

Posted , 7 users are following.

Fiona1311
Fiona1311

I have a very rare gynaecological condition which cause many different issues for individual patients. I've got a vaginal vault prolapse which has been operated on 4 times. Unfortunately all have been unsuccessful. I had to have the mesh removed after the first op. My consultants dont know what to do next surgery wise,however they have realised im not physically or emotionally fit for anything else at this time. It sounds so dramatic but I can't accept it and get on with it. I find it so difficult when my GP or consultants say, "get on with life". Not how I thought I'd spend my 20s

0 likes, 16 replies

16 Replies

  • Jan999
    Jan999 Fiona1311

    Posted

    Hello Fiona. I'm so sorry to hear that someone so young is having these problems. It is easy for a doctor to tell you just to get on with life but obviously you can't. Is it the same consultant you see or have you had a 2nd opinion? 
    • Fiona1311
      Fiona1311 Jan999

      Posted

      I had two ops locally and when that didn't work he referred me to a hospital in London. I now have three consultants there. The next step is for them to take my case to a wider audience of professionals to get more opinions.
    • Jan999
      Jan999 Fiona1311

      Posted

      Well that's good that they are asking for help from other consultants because there are some very clever Urogynaecologists who just may be able to help. Fingers crossed for you Fiona.
    • Fiona1311
      Fiona1311 Jan999

      Posted

      Fingers crossed indeed and thank you for your support.

      I'm lead to believe I'm now at the centre of excellence. My rare condition makes everything more complicated apparently. It's not their "straight forward, everyday prolapse".

      Oh to be "unique"

  • phyl_40063
    phyl_40063 Fiona1311

    Posted

    Hi Fiona,

    Easier said than done, especially when you are in a lot of pain. Does everything function OK toilet wise,

    How are you able to work ?

    I feel for you, if must be demoralising and so physically exhausting.

    I hope you manage to eventually see and find a way through this !

    As Matron says they are working on new techniques and procedures all the time and training up new urogynocologist all the time!

    Phyl 💖💖💖

    • Fiona1311
      Fiona1311 phyl_40063

      Posted

      My bladder is fine, bowels are temperamental. Probably in as much shock as me after 5ops in 3 years.

      I've been off work for 6 months following my last op. (It had only been 3months with previous surgery) I am back as a phased return starting next week. Unfortunately I do a job which requires a lot of moving/bending/stretching. I'll just have to be kind to myself.

      It's really taking its toll on my relationship though. My partner is very understanding but doesn't bring the topic up. I'm sometimes desperate to just talk but never really know what to say, if that makes sense. I'm aware I put a lot of pressure on myself because I can't seem to accept it.

      Thank you for your support and response x

    • Gillian22766
      Gillian22766 Fiona1311

      Posted

      Oh dear god, only 20 with these issues, do you have any pain?

      if you need to talk please PM me I am a good listener, I have been very lucky on the forum, I met welshgirl and we talk by email daily love it as helped both of us we are crazy lady's and poor matron has had a lot of question from the pair of us lol.

      i understand what you meen about your partner, I have had a problem for only 12 months and now it will be a further six for me as I am so scared to do any damage

    • Jan999
      Jan999 Gillian22766

      Posted

      Gillian you know I don't mind. I get quite a few personal messages from ladies. I'll let you know when I'm retiring 😂😂
    • Gillian22766
      Gillian22766 Jan999

      Posted

      Omg I think I just through up and past out at the same time, me being selfish you are my one to one matron no retiring till I am recoverd 💕💕😇
    • Fiona1311
      Fiona1311 Gillian22766

      Posted

      Aww thank you Gillian. You may regret putting that offer out there ha.

      I'm 28 now, but was diagnosed with the condition at 17/18 then the prolapse happened when I was 23/24. This will sound crazy, but I can't remember my body without it! It repulses me. I don't know why I'm finding it so difficult to deal with.

      One doctor pretty much said, I needed to just get on with life. I wasn't dying, it's only a mechanicalfault with my body. Not what I wanted to hear, that's for sure.

    • phyl_40063
      phyl_40063 Fiona1311

      Posted

      Maybe you need to think about a job with lighter duties, I know it's not easy been trying to get back to office work for years, since it signs of prolapse, but lack of up-to-date experience always beats me. I really hope you find a wonderful surgeon with new procedures that can help!

      Phyl 💖💖💖

  • ClaireM.
    ClaireM. Fiona1311

    Posted

    So sorry to hear you are having such a tough time, life really has thrown you a curved ball. I am obviously on this forum having had prolapse surgery but I wanted to reply to you as I have some experience of living with an ongoing and rare condition (although entirely unrelated to yours).

     I have an ear condition which I have had 3 surgeries on in under 3 years. The main symptom being balance problems meaning day to day life was a struggle. I can sympathise with the "just get on with it" and there were times when I was so low feeling like I would never be in a position to live anything like a normal life again.

    Some things that helped me through:

    Talking - having a condition like this takes over your life and sometimes it can feel like talking about it lets it in even more but you can't keep it all inside you. Your partner is probably not talking about it as he thinks you don't want to but talk to him and let him support you. Sometime you just need to shed a tear and that is alright too.

    Talk to people on line, you may not know them but there are people who do have, if not the same, then similar conditions and can offer help. This forum is great but do also have a look to see if you can find any groups specific to your condition. My ear condition is rare, few consultants have heard of it (I have been through 3 in my time) but there is a face book group and an online forum specifically for my condition which has helped no end.

    Knowledge is power - it sound like they are taking you seriously and you are in good hands but I found researching everything I could about my condition really helped. It enabled me to find a treatment that was being tried in the US and persuade my consultant to try it for me (to be fair it was a fairly easy and risk free approach) and it worked. The more you know the more sensible questions you can ask at appointments. Once I did this I felt much more in control and it started to feel like me and the doctors in a team against the condition, I felt like I was part of it rather than having things happening to me.

    Don't give up - I know it is hard. You said yourself this wasn't how you expected to spend your 20's and I can entirely understand that but don't give up hope. What doctors can do is amazing and taking it to a wider audience will enable them to discuss and hopefully come up with something that will provide you with a long term solution.

    Remember whilst you may have to "get on with life" that doesn't mean you have to accept that this is you life forever. Equally it is hard to always be strong and that is when you need to talk and vent.

    Take care

    • Fiona1311
      Fiona1311 ClaireM.

      Posted

      Many thanks for taking the time to respond,Claire. I really do appreciate it.

      I'll take all your advice and support onboard and use it.

      My boyfriend admits he is cautious because he knows how much it all upsets me. I just have to be more forthcoming.

      Once again, thank you x

  • dorothy03601
    dorothy03601 Fiona1311

    Posted

    Fiona,  Sorry to hear.  Prayers for a permanent success this time!  I'm having my repair repeated that I had 6 months ago, so I can empathize. My thoughts are with you,  Stay in touch with the forum.  I don't know what I would do without Matron and these wonderful ladies.   Dorothy ..hugs
  • Fiona1311
    Fiona1311

    Posted

    Thank you very much. I'm so glad I joined the forum.

    I still can't get used to the prolapse, like I'm very aware of it when I'm moving/crouching. It's a constant reminder everyone I shower or go to the loo. There's just no escaping it to give my brain a wee break. I'm very conscious also that my bf notices it or the fact it restricts me during intercourse. Like I said he is aware of what's going on, but I can be very withdrawn and cold at times.

    Have any of you had similar experiences? If so, how did/do you deal with it?

    • phyl_40063
      phyl_40063 Fiona1311

      Posted

      Fiona,

      My hubby found my prolapse hard to deal with when it progressed to 3/4th degree at stage where you can see it easily and it sticks out.

      Even after 1st op, when could no longer be seen he found it difficult to get image out of his head.

      I'm now 9 weeks post op this time and hope it stays up this time.

      It's difficult all the time when you worry about doing further damage and can definitely cause problems with relations.

      You are young yet and hopefully they will soon sort it all more permanently, you should also be able to heal quicker and better.

      Things will sort themselves in time.

      Look forwards and onwards and stay hopeful.

      Phyll x💖

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