Fed up of living in pain

Hi ladies

I am a 26 year old living with chronic pain I'm my abdomen. Every time my period arrives it's a week of hell. I cannot sit down for the pain, I regularly soak through tampons and pads and have to change every 1-2 hours, my belly bloats to the size of woman who is carrying a baby. It hurts to pass urine let alone anything else, and the pressure in my belly is so painful. Painkillers don't touch it, hot water bottles don't work and I am constantly exhausted. It is affecting my friendships and my relationships and I feel so alone. My partner and my friends are sympathetic but nobody seems to understand what I feel and it seems they are bored of hearing about it and having me cancel plans with them. I am due to have a pre op for a laproscopy in 2 weeks but it could then take up to 12 weeks for the op itself. Please if anyone has any words of wisdom or any ideas to help living with the pain until my op I would be eternally grateful right now it seems like I am very alone 😔

5 Replies

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  • So sorry to hear you are having a hard time of it. I know how isolating and alone endo can make you feel when you don't know of anyone who really understands the nightmare of it. Most painkillers don't work for me although I have found tramadol can take the edge off, I wondered if that is something you could try if you haven't already? Have you tried a tens machines? It may be worth asking your GP/hospital for the op to be moved forward as you are in so much pain or if that is not possible to ask whether you can be put down to go for the op earlier if there is a cancellation. Something you might want to consider asking your GP for in the meantime is for counselling/therapy to help you deal with living with chronic pain.

    All the very best

    Sending sympathy hugs your way x

  • Reading your post has really struck a chord for me this evening. I'll be 26 in December and I'm sat almost parallel to you right now experiencing the exact same symptoms. The pain is just so familiar, I've grown to expect it, and expect it to kick off, and when it's a 'good day' and the pain has subsided somewhat, I question what's wrong and how fast it's all going to come rushing back! How ridiculous is that!

    I logged on for a bit of comfort, to know I have people there who listen and just get it. I really really feel for you and wish I had some advice to take the edge off at least. People who don't have this condition can't undersand it, they can simply empathise, which can be patronising. But how can they understand?

    I've felt much more supported and confident since joining this group. It helps mentally, and I seem to forget the pain for just a little while. I'm just a 25 year old woman.

    I all too often feel im boring people, trying to explain my symptoms over and over again and explaining that I'm not being lazy, I'm beyond exhausted. And that I'm not cold, I'm sweating my backside off but this hot water bottle is my only bit of comfort until I can get home to suffer in peace!

    I think you should definitely ask if a cancellation appointment would be possible. We have to persevere and we have to persist.

    I pray that if I'm ever lucky enough to have a real life pregnant belly that I'm proud to display, not a swollen mess, that my daughter never suffers this disgusting disease. And if she does, the way she will be treated is light years ahead of what we all go through now. There's a million more woman who have/are/will experience what you're going through right now, in the near future as their symptoms creep in. We get it. We listen. Just remember that x

  • Hi, it sounds like you're at your wits end- I understand exactly how you feel and seems like you just can't face another period. There's no quick fix unfortunately- it's a case of braving the storm each month. I had an agonising wait of 31 weeks between my appointment with consultant in February and surgery 2 weeks ago- I ended up lodging a complaint with the hospital in question.

    I had severe rectovaginal endo plus large chocolate cyst that had developed during the wait. Adhesions have mostly been removed now along with an ovary and Fallopian tube.

    don't worry about what other people think- it's a lonely disease and only those that have it can really understand. Focus on getting yourself as fit and healthy as possible between now and your op, I found it gave me a goal in the meantime.

    Hope things work out well x

  • Have you asked your doctor to be put on the pill continuously? It's a common treatment for endo and one I find quite helpful as now I only have to endure the endometriosis pains and not the agony that comes with periods! I honestly don't know how I coped before the pill. However this doesn't take all the pain away and I'm on a 24/7 morphine patch to dull the rest of the pain. I also take cocodamol and various other painkillers. Unfortunately I'm allergic to anti-inflammatories which are used mostly to treat the pain. Ask your doctor for some naproxen- this helped me a bit before I became allergic (I became allergic after 6 months of using it-very strange I know!) also it might be helpful to get your GP to refer you to a pain clinic so they can help you manage your pain in whatever way they see best!

    Good luck :) x

  • Thank you all for your suggestions!my doctors won't prescribe anything other than what I am takin as they haven't diagnosed it and he doesn't want to give me something I may not need...forgot he was me and knew how much pain I am in! The worst thing for me is I'm a very active person I play netball I go to the train and I'm training for a marathon and excercise brings the pain on I'm horrific waves sometimes. I'm going to try some of your suggestions and hopefully I'll be more comfortable whilst waiting for the op!