I feel like I'm getting no where :(

Hi guys, I guess this is kind of a post to vent my frustrations! So I apologise in advance if it's long... I've had pains in my pelvis for the last 4 - 5 years but I thought it was just my body recovering from child birth it wasn't until 2 years ago I actually saw my gp about it. She referred me to a gyne straight away but since then I just feel like I'm getting no help from anyone, I first saw my consultant in 2015 and I was given the Prostap injections which gave me no relief. I had ultra sounds and then a lap which confirmed I had endo which was removed but I still had no relief from the pain. This was in may 2016 and I waited until september for my follow up appointment to be told to try taking my contraceptive pill with no breaks for 3 months and I would be seen again.. fast forward 7 horrible months of pain and I finally had my appointment today to be told he was referring me to a pelvic pain clinic as he didn't know what else to do for me 😣 Which he said can take a few months for the appointment. He suggested the coil but with the hopes of starting a family in the next 12 months it is pointless... I am in so much pain every day, I live off pain killers, I get sent home from work and I struggle alone with my daughter as my husband works away. Im 2 years down the line and no better off, I just don't know what to do from here. I'm so fed up of waiting months for appointments to come out with no more help than I went in with. Am I the only one who feels this way because right now I feel very alone, I have the support of my family but I don't think they understand the mental and physical drain this horrible diesease has on you!

4 Replies

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  • Am so sorry to read the agony you going through, I don't know the feeling but as a human i feel your pain... just hang in there hun, the good Lord will make a way for you 🤗 Xxx

  • Sorry you are struggling. Where was your endo removed from and what method? Ablation excision etc? Have you explored tens machine or acupuncture. What pain killers do you take? Some opiod painkillers make pain worse over long term use so will exacerbate your problem

  • It is so so hard. I'm so sorry that you are having to go through all this. You're in the right place to vent and there are lots of people here in very similar situations who understand. You are definitely not alone - although it does sometimes feel like that. My situation is not exactly the same as yours but I have spent the last 3 and a half years dealing with infertility, endo pain, struggling to get diagnosed, waiting for various ops and procedures etc so I have a bit of an idea. The waiting is horrendous at times and it's one of the things I've really struggled with the most. I always feel a bit better when something is actually happening but the inbetween bits and the not knowing how long its going to take to get that appointment is really hard. Then yup I know that feeling, you've waited months for an appointment and really hope that this person is going to understand your situation and have some sort of answer and it just feels like they don't really know either! Never mind the fatigue from the disease itself the whole process of navigating the system is exhausting as is being on lots of different hormonal medications. I hope things start to feel a bit easier for you soon. Stay strong and remember you are not alone!

    Moogs xx

  • I feel the same, I've got to wait till August for my appointment at the pelvic pain clinic, went back to my Dr to say I can't put up with it for another 5 months, she wondered why I was so tearful!???? & suggested I was depressed....well I certainly felt it leaving there ! I hope you get things sorted but I'm fast realising it's a long road with not much relief x

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