I'm scared and don't know how I'll cope on a 5 day camp!

[Flower58]

Hi everyone I recently joined here to share my story with people who understand what im going through. When I was 10 I was vomiting a lot and having horrible pains, so bad that I had a term off school. During this time I was going back and forth to hospital under going tests until nothing come back after the final colonoscopy, they diagnosed me with IBS. For the past five years I have believed that I was a sufferer of IBS and couldn't understand why going to a dietician wouldn't help, but eventually learnt to live with it. I got my period when I was 11 and the pain was horrible! my period was heavy, and was coming nearly every 2 weeks. During the years (thinking my period pain was normal and I just had ibs) my cycle became more and more painful to the point where I would faint or collapse from the pain. Codeine was the only form of relief. Around 14 months ago I gradually started getting pain when urinating and doctors did a urine test and told me there wasn't anything that showed up and didn't prescribe me any form of medication. After seeing many doctors (even a gastroenterologist for possible chrons disease) and being told that 'Its all in my head' and 'all periods are painful', even after waiting 5 hours in the emergency hospital room to just be sent back with a weak laxative. Fast track to today and I couldn't be in more pain, its only gotten worse. I have been spotting brown blood for a weak and a half (despite my period due in another 2 months, because I have been using birth control for the past 3 years due to the severity of my period) two codeine tablets every 4 hours (which only give an hours relief), and when I walk it feels like someone is literally tugging on my uterus and ovaries! I have camp in 3 weeks for 5 days and have no idea how I will do it I have been on the waiting list for the gynaecologist for 3 months now and still haven't heard anything, even after calling them twice. My mum has endo (her uterus attached to her bowel) and I know that the chance of a mother passing endo down to her daughter is very high, we have fully looked into my symptoms and they all link to endo. At this point my family and I know that I probably have endometriosis and its just a matter of it being confirmed in a laparoscopy. I am currently taking my birth control, one and one half of endep, and 2 codeine tablets every 4 hours and I still feel like death. This pain is so unbearable and my friends keep insisting 'its just a stomach upset'. I don't use tampons because of the pain and have never had a physical exam - because of this I am fearing to see the gynaecologist! but at the same time I just want them to hurry up and diagnose me so I can work on treating my symptoms. The camp I have to go on is in three and a half weeks and I keep telling myself to go so I can prove that I can still do things even with this horrible, horrible pain and separation anxiety (I gained separation anxiety after giving up on my social life due to the pain). But how am I supposed to go if I am doubled over in pain crying after a walk or meal? Is their any stronger over the counter pain relief suitable for 15 year olds? does ANYTHING put this pain at ease?!

[JeanOsborne]

Hi I just wanted to let you know that I know exactly what you are going through. I've been suffering since age 15 ( now 42). Please don't give up trying to find out what is wrong like I did. I've just had to have a total hysterectomy with removal of both tubes an ovaries with excision surgery due to very severe endo and adenomyosis, because things had been left so long without any treatment. Do not end up like myself. Keep going back to GP every week if need be and keep phoning gynaecologist . Try the admissions line as they might be able to give you an idea of how long it will be. Just don't give and stay strong. Fight for what you need. You a not alone. We're here if you need us. Sending hugs.

[Flower58 in reply to JeanOsborne]

Thankyou so much, I promise I wont give up I just wish that I was taken more seriously. I'm sorry you have to go through this horrible pain as well. I wouldn't wish it upon anyone x

[JeanOsborne in reply to Flower58]

I know what you mean. It really makes me angry that we're not taken seriously. We shouldn't have to fight the way we do just get some sort of quality of life like everyone else who are healthy. Just a bit of advice the codiene will probably be causing constipation, so if you are having trouble with this ask GP for Laxido. I've been using this now for about 7 months and have found it really helps. Have you tried a tens machine? Lloyds pharmacy sell disposable ones for £4.99 which you could try and if it helps then you could invest in a proper one. Also heat pads can be useful with pain relief. It may also be worth discussing other forms of pain relief with GP . I'm here if you ever want to talk you can also pm me if you feel more comfortable that way.

[Flower58 in reply to JeanOsborne]

Yes I do get constipated from the codeine, I take two coloxyl tablets and 2 movicol laxative sachet's and that seems to get things moving. Its annoying how you constantly have to find that balance between your body, it becomes very tiring Thankyou for your suggestions though I will give them a go if my body starts getting used to them. I hope one day we are taken seriously and much more awareness is brought to endometriosis xx

[Flower58]

Australia