Up against a brick wall

[AJB]

Is anyone out there feeling like they're up against a brick wall trying to get past t
he "ladies get this problem,it's just one of those things you have to get on with".P
I had a hysterectomy at the age of 29 for severe endometriosis,the whole of my abdominal cavity was stuck together with lesions,so I read with interest the Evil Twins Syndrome as I have been having pain and frequency problems. I printed it off and took to the hospital with me as I was having Urodynamics tests. I was told by the consultant the link was rubbish and I shouldn't believe anything on the internet.The test was very painful as the catheter came out twice. I was told that I could hold enough and there wasn't anything they could find.I came home and just cried,I am in such a lot of pain with it and go to the loo a couple of times an hour.I've had a cystoscopy that showed inflammation and scar tissue,apparently none of this points to IC according to my doctors.So what do I do now .Its so frustrating that I've already been through this "women's problems" with the endo for five years and now its happening again.Please tell me I'm not an hysterical woman!PS I am new to posting so excuse me if I've sent it twice!

[ICNDonna]

It sounds to me like second opinion time. I suggest you see a urologist who treats IC patients.

Donna

[tigger_gal]

I would seek a second opinion too... sending you hugs and prayers
Brat

[hdrenzyk]

I too have endo and it sounds like since your hysterectemy didn't help your symptoms, then it might be IC. I had a lot of surgeries for what my gyno thought was endo and none of them helped my pain. It wasnt until I went to a urologist that I found out I had IC and that it was the problem, not my endo. I would suggest getting a second and maybe even a third opinion. (I have been to four different doctors until I finally got a clear diagnosis)

[cass2376]

Dear AJB,
Yes it is 2nd opinion time!! I too had a hystorectomy at 29 and thought that would have taken the pain away, wrong!! I was told that the first surgery would help me a lot, (they scraped out all the endo they saw) But after my 6 weeks of "healing" time from surgery was over, my pain was still there. Thats when I was tested for IC through the Potassium Resestance Test. They put a thin tube into your bladder(ya, that was fun), then they fill your badder with one solution, ask how it feels, empty your bladder then fill it agian with another solution,agian ask how it feels, then agian empty it. One of the solutions will be just plain solution, and the other is potassium, and believe me, if you have IC, you will know which one is which. The potassium one kills!! Anyway, they diagnosised me with IC a year ago by that test and my past history ect. Not everyone with IC have "every" symtom as others!! Everyone is different so don't give up!! "Try" not to get discouraged,(I know, thats easier said then done!) It took me 8 years to get diagnosed for me but it sounds like your on the right track and on your way to finding your answer. I know how hard it is when you know you are not imagining your pain and frequency ect., and its especialy hard for you to be told "everything on the test results look fine" when you KNOW its not! Just hang on and find a doc that deals with IC. Call around till you find one and explain everything you have been through and what you are feeling now. Take care of yourself and DONT give up!!!! God Bless you, Cassandra

[AJB]

Thank you for your encouragement.It feels good to know I'm not going gaga!You're picture really cheered me up.I love cats and have an 8 month old kitten called Tom who runs around the house dragging a rubber alien behind him.He certainly keeps me amused.Take care
Alison

[cass2376]

Your welcome Alison! I love cats too!! I have a 16 year old 1/2 persian and1/2 calico named Felicia. She is a tough gal and keeps my spirits up too. Your not going crazy and just remember not to give up and keep going till you get an answer, cause you deserve to know whats up, and to get relief!!
Take care, I have got to go to bed sometime today, Its almost 3:00AM here in California!!
My pain was keeping me up but my meds are kicking in so I should go to bed!:) God Bless you Alison, Cassandra

[AJB]

I would seek a second opinion too... sending you hugs and prayers
Brat
Thank you replying it makes a difference to know people understand.I can believe your dog says momma because my cat used to say it in front of people.He was 16 when he died and I loved him to bits.I have a new kitten now called Tom.Hope you are having an ok day.Alison

[AJB]

I too have endo and it sounds like since your hysterectemy didn't help your symptoms, then it might be IC. I had a lot of surgeries for what my gyno thought was endo and none of them helped my pain. It wasnt until I went to a urologist that I found out I had IC and that it was the problem, not my endo. I would suggest getting a second and maybe even a third opinion. (I have been to four different doctors until I finally got a clear diagnosis)
Thank you for reading my note.I'm sorry to hear you have endo its the pits I know.I'm feeling a bit more upbeat now and am determined to get some answers.I couldn't believe how similar other peoples symptoms were and am truly thankful I found the site.Take care .Alison