In hospital and desperate - I am new here

Hi, I started with chronic pain at the age of 17 which was diagnosed as endometriosis. Numerous laparoscopys and hormonal treatments later I was advised that a total hysterectomy was the best option which I had at the age of 50. I was expecting keyhole surgery however when they came to operate aside from chocolate cysts my bowel was stuck to my uterus so an incision was made. As both my ovaries were removed I wa put on Estraderm patches which I stopped using last September. I must I thought that this would be the end of my troubles. How wrong I was!!

Since the beginning of January I have been to and fro the doctors with symptoms a UTI (at least 7 times) When my urine has been dipped only a couple of those tests have come back showing infection. I was admitted to hospital 11 days ago with severe abdominal pain and suspected appendicitis. After a CT Scan its has shown that I have adhesions and a partially blocked bowel. I have been given a special diet to try and today my pain levels have been quite good and I have been able to eat however the pain low down in my tummy is still bad and I appear to have signs of a UTI (forth time my urine has been dipped in the 11 days) and have been started on Trimethraprim whilst waiting for a urine culture to come back.

I guess my questions are:

1: Has anybody experienced anything similar and what helped?

2: could the adhesions on my bowel be what is affecting the bladder?

I have been referred to the Urologists but they don't seem to speedy in coming to visit with me.

Thankyou in advance of any advice you can offer?

6 Replies

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  • I am very sorry to hear about everything you are going through. Your situation sounds very similar to mine. I also had endometriosis and had a hysterectomy at 37. I still have chronic pain due to Crohn's Disease and adhesions. Regarding your bladder, has anyone mentioned Interstital Cystitis? I too had multiple "false" UTI's along with severe pelvic pain, frequency and urgency. I was diagnosed 20 years ago and keep it mostly under control with only a few flare-ups a year with medications (Elmiron, Urelle, Trospium Chloride, and Trimethoprim). I am lucky enough to have found a wonderful Urologist who is an expert on Interstitial Cystitis. I hope you will find one that can help you.

    Please know that you are not alone. I understand your pain and frustration and hope you will be feeling better very soon. Please let me know how you are doing. Good luck with the Urologist. Take care.

  • Does stress affect Interstital Cystitis?

  • Absolutely! Stress can cause flare ups. I completely feel your pain. I too suffer with endometriosis, adenomyosis and IC which has now been renamed as bladder pain syndrome. I've attached a link to the RCOG greentop guidelines on both its diagnosis and management. One of the most important things that isn't always mentioned is lifestyle changes which are in fact the first line in management. Unfortunately you won't be seen quickly by the urology team as it's unlikely you will be seen as urgent. I waited 12 weeks for my referral despite being in severe pain and having already been diagnosed by my fantastic endometriosis specialist. Unfortunately I'm one of the few that nothing works and am considered refractory to medical all treatment but most (and I stress most) do respond very well to medical treatment if needed. It maybe you only need lifestyle changes but these do need to be carried out alongside medical treatment if you need it. Most people have some flare ups but can quickly bring them under control again. Please don't read forums where most of the people posting are those like me or who suffer very frequent flare ups - those that manage to control or prevent flare ups very rarely post. At this moment in time it maybe bladder pain syndrome causing all or some of you pain alongside your adhesions. The problem with surgery is that once you go in you will to some extent develop adhesions and going in again to remove them will create a never ending cycle of adhesion - surgery. They might decide to remove them and try using a barrier to try and prevent further adhesions but I've heard mixed results. I hope this has helped but please feel free to ask questions on here or message me privately if you prefer. I will be off line most of today as I have an urgent hospital appt. But Andrea our other admin is here to help also.

    rcog.org.uk/en/guidelines-r...

  • Please, can u help me by telling me what meds u r on for the cytitis? I am on mybetriq and amitriptilline. I'm not getting much relief, I am also following the diet. Thank u in advance for helping me

  • I had a hysterectomy with ovary removal in 1992, for the same reason as you however I did not have any trouble with lesions.

    For number two I would guess they are likely to be affected but that is not a medical opinion.

    How long were you on HRT and why did you stop taking it? Recent thinking about the removal of ovaries is that they affected far more things than we thought they did. The after effects can be a whole battery of hormone related problems such as weight increase, fibromyalgia and depression over a period of years.

    Joan

  • Omg ladies I feel your pain I'm am getting all sorts of bladder symptoms following lap for endometriosis three weeks ago I also have adenomyosis and fibroids with adhesions ovary stuck to uterus. I am currently waiting for msu results having trouble peeing since the op burning after I've been. They did remove cervical polyp which I have put soreness down to but after reading your posts I think I might have IC too.

    I am being investigated for sjogrens which is auto immune things are not right I would give anything to have the old me back x

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