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Doctors Not Helping Me Deal With My Pain!!

Posted , 3 users are following.

lisa2005
lisa2005

Hi,

I am hoping that maybe somone could help me with regards to my problem. Since May 2013, 3 days before starting my period i began with pain in pelvic area which i assumed was just a painful period but when my bladder began to fill it was obvious and i was in alot of pain, within minutes of the pain i was desperate for the toilet to the extent that i nearly didnt have the time to pull my trousers down. Since this day my bladder has been very weak. It seems to flare up around my period each month. A couple of days before, i start to get pains then the urinating frequency increases, im getting up in the night to use the toilet (which is very unusual for me). I can feel my bladder filling up just before i need to wee its painful and as i wee i get a sence of relief in my bladder but i get a terrible burning/sharpe nerve like pain inbetween my vagina and anus and feel the need to push for more wee. 

Sometimes when i need to wee it can be a full wee but most of the time its little dribbles but feels like there should be more. 

Sorry if im not explaining my self very well its hard to put it into words.

So a little bit of background information:

Im 24 and have been in a relationship with my boyfriend since we were 15. We have only ever been sexually active with eachother.

No Children so i've been advised against the coil (even though the nurse seems to think this would be ok for me and cure my problem due to the fact i wont have periods,, maybe)

I have never reacted well to any other form of contraception other than the pill. The implant i bled on and off everyday for a year and became anemic, so was put on the patch aswell to stop the bleeding. The patch alone was ridiculous, then i started on the nuva ring, which is where it all began....

I was on the nuva ring when this began just over a year ago, the doctor was unsure if my contraception was the problem so i changed to the depot injection, i was only on the injection for the first 3 months (so one injection) and i came off it as it didn't agree with me. But during this time i had no period so i had no flare up, which was great. But then i was put on a combination pill so after the 3 weeks on the pill i had a period and 2-3 days before my period it all began again, i can't sleep at night as i lay there crying in pain, my relationship with my partner is suffering terribly even though he is very understanding, i cant stand for him to touch me when im in bed in pain my emmotions are a reck, all i want to do is sleep and hide away from the world.

I went to the doctors in the June of 2013 the next month after it first started as it happend again on my period.

To begin with i was told that i needed to change my sanitary products, which was fair enough so i did. I went to boots and got some natural cotton pads which didn't have fragrance in or anything that could cause any problems. This didn't help me. So i went back and was told it was my shower gel/ bath foam etc so i changed all this to simple which i was advised. Next month it was back again, kept me up at night, i sat in bed crying in pain wondering if to wake my partner to take me to A & E. I just didn't know where to be. 

So this became something i just couldn't face. When i got my pill i just took 3 months straight without a period and i dreaded the day i had to have my period. 

The day came and it started up again, this time i could hardly walk i was in so much pain, (which i understand could be down to the fact of no period for 3 months)  i couldn't sleep at night which ment for work i was in a totaly different world to everyone else all i wanted to do was curl up.

So once this episode was over i went back to the doctors and was insistant that these "methods" of changing my sanitary and cleaning products were not helping.

Last month May 2014 i had numerous tests. 

I had STI checks obviously negative, ive had 6 uti checks over the past year with the doctors all of which are normal no bacteria, ive been tested for B.V & Thrush and the doctors sent off a urine sample to the lab for furthur testing which again came back normal.

I have also been examined physically by the nurse who says im all "normal". 

I found this interstitial cystitis just from putting my symptoms in google, i know its not the best to google your symptoms but im at a loss to know what to do. I don't seem to be getting anywhere with my nurse as she just prescribes me cystopurin, but i haven't got cystitis so this isn't going to help.

Also since May 2013 when this first happened even when im not on my period my bladder is very very weak.

Click here to view image

Does this sound like it could be interstitial cystitis?

I did read that doctors don't know enough about this paticular problem so dont seem to bother too much about it but surely i shouldn't have to worry about when my next period is due?

Any advice will be greatly appreciated. I am desperate. 

Thankyou 

0 likes, 4 replies

4 Replies

  • tina131
    tina131 lisa2005

    Posted

    Click here to view image
    • lisa2005
      lisa2005 tina131

      Posted

      Thankyou for your reply, I feel at a complete loss with it. I have called the doctors again today to ask for an appointment to get refered to a urologist, my problem is i have a full time job and as my doctors dont seem to understand the pain im in, im at work in a completly different world to the rest due to lack of sleep and the pain alone is so tiering. 

      I dont understand how the doctors can just keep dismissing this as its a huge problem and has a big impact on my life. I should think if it was one of them that had this paticular problem they would be able to get it seen to. I wouldn't wish it on my worst enemy but i do wish my doctor had half a idea about how painful this is. 

      Normally it will calm down 2-3 days after my period but it hasn't this month and it's still happening now. I have started a strict diet but as i dont eat meat either it dosn't leave alot for me to choose from sad 

      And to be fair from the sounds of it even if i did get to see someone theres not alot they can do for me anyway other than properly diagnose me which i have sort of already done myself but what elese can you do when theres no other real option?

      Thankyou for your reply smile 

    • lisa2005
      lisa2005 tina131

      Posted

      Just a quick query also....

      Do they anethatise you for the camera or just local anasetic?

      Thankyou 

  • lynne69494
    lynne69494 lisa2005

    Posted

    hi lisa,

    l went for years with symptoms of moderate-severe-intense pain, disabling at its worst, generally poor health, aneami, with samples showing clear. So gp who put it down to post op, symptoms started after csection, then it was gyny, d and c showed nothing, then hormonal with tablets that gave me violent headaches, nausea. Predictably it finally was put down to phycalogical, neurotic, hypacondria,

    whilst it was devastating my lifestyle, partnership, symptoms puts years on me, nightmare l can hardly bare to think about to this day and thats l6yr ago. l wish l could understand why any gp would let me any women go on for years with poor health and severe pain despite them going in on numerous occassions over years asking near begging for help, in tears at times. Is it all because a simple urine sample shows clear overiding her clearly stated distress, or is it the old fashioned cliche of neurotic women and phycalogical, or just their ingnorance and arrogance, costs. for me its unforgiveable,l cant get back those years of frequenct pain and poor health, affects on lifestyle, partnership. l would have gladly paid cost of consultation and op, little public knowledge or much from gps, no google. . All it takes is a l5-30min procedure re cystascope to diagnose it, which is done under anascetic, with a few hours recovery on ward, at least you know whats causing your problems and there are ususally affective meds that can help a lot, they reduced my symtoms by about 90percent over a year to two. l was also referred to support group, started by Annette who had ic and suffered much, she raised awareness of ic. My main triggers for attacks were menustation and intercourse, but could be spontaneous also. l sometimes found a warm big soft wad of tissue held against yourself, just snuggly without pressure could help when peeing, different things help different people, but rememeber crying with pain even in bed at night, not being able to walk comfortably and being desperate also, but the main thing is to get  the cystascope, imperative to get diagnosis and urologist advice.  Good luck 

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