So close, yet so far

Hi everyone..

Well I have never posted anything on one of these forums before but recently I have been feeling so down and alone going through it all I thought it was worth talking about it all. I am only 17 years old and I have been suffering these with these chronic pelvic pain episodes for 3 years now. I have been back and forth to my local gp, who referred me to urology thinking it was to do with my bladder/kidneys which has been ruled out now. I have lost count as to the number of times I have had to go to A&E for pain relief. I suffer really bad periods and I always have done, I am always tired and feel like I have someone twisting my insides. The pain is always there, on good days it is just a dull ache but then when it gets bad I feel as if my insides are being twisted and pulled apart. I have no social life because of how ill I feel each day.. and I am in a very strong relationship but I find it difficult to be intimate as it causes me so much pain.

This week I was rushed back to hospital after yet another sudden attack on pain. They admitted me to gynaecology. I then had an internal examination, which was extremely painful, then they done internal ultrasound and found fluid around one of my ovaries which they told me could be a burst cyst. They reluctantly decided I do need to have a laparoscopy to look for endometriosis, which I know they are not keen to give me because of my age.. but the consultant that I had treated me like dirt on his shoe and I was in tears afterwards. He spoke down to me and was very patronising, he said "Do you really understand the risk, that we may puncture your gut and leave you with a colonoscopy bag and not even find anything to diagnose?" I felt utterly horrified that a doctor would even say that to a patient. I feel like because I am so young they all think I am over reacting to the pain, believe me I would not willing be having an operation if it was not necessary. Anyway sorry for my rant, but I have been listed for a laparoscopy which will hopefully be within the next 6 weeks, but really I am just wanting to hear about how other people felt when they were going through the process of getting a diagnosis because this is really emotionally effecting me and I feel like nobody really understands or is listening to me properly anymore.

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11 Replies

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  • hi...just hang in there and things will be resolved. Its really not so easy to do though when you're in the middle of all this emotional and physical pain and trying to distance yourself from it. Try to look at it as a time that has to be gone...

  • Hi I'm 32 and just had my 3rd lap. I was diagnosed with the endo 3 yrs ago and it's really horrible to go through especially if your going to the hospital and u feel like everybody is looking at you like your crazy. I had a partial hysterectomy...

  • Yep, it doesn't get any better when you are older when the dr.'s treat you like you are stupid and wasting their time with your made up stories of pain. You are luckier then most in the fact that they ARE doing something so early. Just be prepared...

  • Oh you poor thing. I was diagnosed at 17 after years of pain and being treated appallingly.. The first time I had a consultant appt he didn't speak to me at all, did an internal then wrote to my GP saying 'this girl has painful periods'. I was 16...

  • I was 15 when me and my mum went to the doctors about my severe pain, it helped that the gp was one I'd had all my life, but my mum being there helped a lot if anything she remembered everything he was saying as I was in a bit of shock. I'm having...

  • I was only just 19 when I first went and they were the same to be, treated me like dirt constantly trying to trip me up as they kept repeating the same questions I felt this was to see if I would answer them the same. At the end of my first...

  • Hi Susan

    I'm sorry to hear of your situation. I experienced pain when I was a teenager too but sadly didn't get diagnosed until I was 32. I'm 46 now and just had my 5th lap, although the pain is a lot less I can relate to how you are feeling...

  • Hey keep calm...your not alone...im 31 and iv been all through it to. Docs dont understand the true pain of this. Can i ask if your in london? I have an amazing endo cinsultant.. took forever to get to her but was worth it. You could ask your doc...

  • I am sadly in Edinburgh, this doctor that I am seeing is meant to be the best endo specialist in Scotland, which he may well be but sadly he lacks people skills :( x

  • Appalling behaviour from the doctor he should ashamed of himself I do wonder if it was his daughter or wife in your situation would he have wanted someone to speak to them in such a manner shame on him

    Take care and hope you get a diagnosis soon

  • Hi Susan

    I'm so sorry to hear you're in so much pain. Like everyone else I was disgusted to hear what they said to you and to hear how badly you were treated. I've also experienced the same level of 'lack of human understanding or feeling'. Sadly, you don't always get a better response when you are older. I was told to "stop crying like a baby" when I heard some - for me, life changing news.

    I decided to get my lap done privately in London, as my local hospital never listened to my concerns, needs or anything. They just wanted to get me out and had the same approach. When I said they were being unprofessional I got the reply "welcome to the NHS".

    I would recommend a lap if you can get one. If you can go private even better. Try to find someone good if you can. You know you're own body and how you feel better than anyone else in these hospitals etc. They are right, every operation comes with risks. However, as I've come to learn... if you open any packet of medication they had a huge list of "this may cause" and you could easily be convinced you'd get all of them. There are risks with everything - crossing the road etc. I was terrified, but after surgery myself "it's alright'. I hope you get better treatment. I think you or your parents could request surgery at another hospital that may be more "human". Please take care of yourself. You are not alone, and this site has given me so much hope and helpful advice. You're in right place :) Hugs x

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