At wits end..... Pleaase help!

Hi everyone, will try keep this short. After suffering for years I had a lap and hysteroscopy in May this year and diagnosed with endo and they also found a septum. Had a follow up appointment and there planning on burning away the endo that is there and cutting away the septum. This was in September and they said the op would be within 16 weeks. I had my pre op I'm October so thought things would be happening soon, however when I phones to follow it up they said my op wouldn't be happening until atleast February as it is not classed as an emergency. Needless to say I was devastated; my symptoms are getting worse, I can hardly exercise anymore without their being horrendous pain, my periods are all over the place, there is a lot of bleeding after intercourse and work is starting to suffer. I went to see my gp today and they said there's nothing they can do. I feel lost now, any advice? X

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  • Two pieces of advice..stop exercising and stop having sex..both can wait till after the op. No point whatsoever in making things worse for you till then. The only real option for going quicker is Private which costs far too much.

    Feb might seem like a long way off when you are in pain, but realistiacally on the NHS that is not very long for non-emergency surgery.

    Having a septum is not going to be giving you any extra pain of discomfort. it is just a under-developed womb partition. In the last stages of womb development when you were in your mother's tummy the womb for some reason stopped a bit early. That is all. Easily remedied.

    Mine stopped much earlier and I have two fat sausage shaped wombs distinctly separate and two cervix..nothing can be done about that.

    What you can do for yourself in the meantime is everything to not be in pain. Rest, gentle walks or pottering about the house (definitely no team sports, gym equipment, high impact on the tummy exercise. If you have endo..lots of fragile wounds inside, everytime to aggravate them, the menstrual liing covers can shed off, causing an internal bleed which then irrtates and HURTS the nearby tissues that the blood lands on.

    Your body will survive without exercise and without sex for quite some time and really this is the best advice I can give you. Don't deliberately do anything to make yourself in worse pain. Pain is a warning sign that you are doing too much.

    You could ask the hosp to consider you for any short notice cancelled appointments, and this time of year they get lots -because people come down with coughs and colds and have to delay their ops.

    Look after your endo wounds and be kind to them.

  • Thankyou for your reply :) I think I just need to not think about it.... its easy to get yourself into situations where you dwell and feel sorry yourself I guess and it takes words of wisdom to pull yourself out of the pit. Thankyou x

  • Hi, it is frustrating all this waiting isn't it! I asked to be put on the cancellation list for my lap and did manage to get op a month earlier than planned but had only 5 days notice so you would have to be able to take time off work at short notice. If this is possible it's always worth asking. Since being diagnosed in march and told needed another op had follow up in July and booked for laparotomy for 29th November. It's been a long wait but due to work commitments this actually works better for me but having hope that this op will reduce pain will make it worth the wait! So yes I'm struggling with pains some days and just want it sorted now! I know at least it's booked and my goal is just to feel better in the new year. There's been so much waiting before diagnosis I guess I've just accepted all this waiting is part of living with endo so I do what I can but take it easy not to overdo things as I know it makes my symptoms worse. Unfortunately that includes no sex but it's just not worth the extra pain, but I hope after op things will improve there too.

    Sorry I don't have much advice but understand how frustrating it is. So take it easy and look after yourself x

  • Hi littleduncs, I did exactly what lillyflower suggested and asked to be put on the cancellation list. Not only did I get an earlier appointment, but they advised me that I should do that with all of my appointments from then on including clinic appointments, as it shows how "desperate" you are with your situation. I know this sounds silly, but it has worked. All my appointments have been extremely quick since I signed up for "cancellation" appointments. Hope you get sorted soon x

  • Thankyou for all you replies. I have indeed asked to be put on the cancellation list so fingers crossed this May speed things up. To be fair when I had my first lap they gave me five days notice and this was without being on that list, or so I'm assuming. I'm also looking into changing my diet quite abit and cutting things out so hopefully this will help too. Thankyou for all you replies xxx

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