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Alaine1

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Reply with quote  #1 
Hello

I will try and keep it short as it gets too complicated otherwise!

I suffer from endometriosis, adenomyosis and IC, also have asthma and was previously treated for CFS after suffering from a persistent viral infection. I was up until March last year treated by a very kind urologist at Barts hospital and after every treatment failed I was referred to uclh for bladder removal and reconstruction. I did have my doubts about being referred there as I wasn't sure I'd be believed. It took over a decade for the IC along with the endometriosis and adenomyosis to be diagnosed. I saw the urology consultant at uclh after a 5 month wait and decided I wanted to try the sacral neuromodulation first which unfortunately failed. A follow up appt was made for 4 months and also to see the specialist nurses. I then received a letter saying I needed to see a second urologist for a second opinion. This caused a lot of upset. I saw this consultant last month who has decided based on my sister dying 3 years ago, viral CFS and me suffering from all of my pelvic pain conditions I am not suffering from IC/ painful bladder syndrome but medically unexplained symptoms which is obviously a psychological condition. At this point I'd already had the symptoms for well over a decade. She also said that IC can only be made when the bladder is small and scarred. I said that simply isn't true as that's usually only seen in patients with Hunners lesions. I have my follow up with her this week before seeing my consultant in July where a final decision will be made on my treatment. One of the reasons I'm so upset by all of this is because I had to fight my GPs to get my other conditions diagnosed and I was right not only about those too but also what I was suffering from. My endometriosis specialist who is fantastic has previously by working with my original urologist and more recently a urogynaecologist who I meet in her clinic. I'm awaiting another appt to see her. I feel both a huge amount of anger and upset over this so how do I approach my appt this Tuesday with her? At the moment if I chose to ignore her opinion I will be in denial but if I go along with her diagnosis I won't get any treatment. I've had no treatment at all since the wires from the SNS were removed in November and as you can imagine my symptoms and pain have been awful. Any advice appreciated x

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Moderatorsusan

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Reply with quote  #2 
Firstly I'm so awfully sorry that you have gone though this experience and I can imagine you must be extremely distressed.

I'm still amazed that in the 21st century urological and gynaecological issues for women are described as psychosomatic which implies essentially you should buck your ideas up and get on with it. There is an underlying reason or reasons why you have these chronic bladder problems but unfortunately as yet modern medicine is still playing catch up with woemn's pelvic floor issues and it helps no-one when you are dismissed as being hysterical. I would be very strong with her and say that her comments caused great distress and given than UCLH has an excellent pelvic pain team you were surprised that she didn't consider referring you to that for assistance with managing the ongoing pain via their pain management courses and counselling which will help not only with the physical symptoms but the emotional distress that managing a bladder condition requires. You require an immediate referral to the team and I would also let her know that you will be expecting this from her at the very least. It is true that now IC is being diagnosed without Ulceration and that in some chronic cases the bladder can shrink but to diaganose you as simply being undiagnosable is not good enough. A weakened immune system due to CFS can often lead to areas of inflammation worsening and also infections developing. II'm sure you are working on your CFS and are managing your diet and energy levels through supplementation, nutritional balancing and phased periods of working.

Given that you have endometriosis and adenymosis something I myself suffered from for over 10 years before diagnosis was made, has no-one made the connection that this may be impacting on your bladder? Endo treatments involve restricting oestrogen heavily something that can cause issues as the tissues in the vaginal and urinary tracts thin allowing more infections and irritation into the bladder let alone the vagina as the PH of the vagina changes which can build up tissue inflammation and vulval vaginal problems. Additionally they can also prescribe high amount of progesterone which can impact on the bladder relaxing the muscle walls increasing the need to urinate. I'm not sure if your endo is under control or what the proposed long term treatment plan is but when you see your specialist in July hopefully this can be discussed as a balance needs to be found.

I should add there is an excellent Women's health team at UCLH which works apart from the Urology team in a different department and you may want to consider seeing them as they have a specialist very familiar with endo and adenimyosis as well as IC/PBS/recurrent and chronic UTI/urinary incontinence and other uro gynae issues. She is also one of the few consultants working actively in research on the bladder on an ongoing basis. Keep this one on the back burner until you have seen your Endo specialist.

Please don't feel that you have been given up on by the medical profession. Sadly there are a lot of frogs out there but a few princes and you need to be helped and guided with this. The BHUK office can certainly help with more contact details for other specialists and there are local support groups of patients across the country that meet up on a regular basis, People have found these hugely supportive as they no longer feel isolated. There is a nurse who is in office every Wednesday and the contact details to call the advice line are on the home page.

Alaine1

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Posts: 7
Reply with quote  #3 
Thank you for your reply! I have a very good endometriosis specialist at the Royal. London hospital who has been fantastic and I wouldn't want to change from her especially as she is considered one of the best in London. I also see the pain team at Barts hospital and am waiting to go on their specialist pain program. At the moment it's just the urology side that is the problem. I'm awaiting another laparoscopy but am currently being treated with long term zoladex as unfortunately I have failed all other treatments for adenomyosis including multiple treatments at once. I couldn't continue bleeding for 3 weeks out of every month with the severe pain and heavy bleeding/flooding. I really do feel so let down by uclh but I will definitely be letting her know on Tuesday how upset I was to more or less be told it's psychosomatic. I had these bladder problems which developed a few years after my gynae problems did and I don't feel the zoladex has made things worse x
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