Anyone else had a problem with UCLH endo centre? I've been left with no help

[synnova96]

Hi,

I was previously diagnosed with st2 endo in 2006 and have had two laps privately, the last was last march when I had laser and mirena inserted. Since then bowel symptoms have continued and feel bloated and in pain a lot of the time. My private insurance has now run out so i asked gp to refer me to the specialist centre at UCLH. Been waiting since Oct for my appointment which I had on feb 21st.

I saw a nurse and they gave me an two lengthy and painful internal and external u/s scans one with (I presume) a trainee who said I had adhesions on my rt ovary to the bowel and then she got another dr to come and scan again (very roughly) who said he could see no endometriosis or adhesions. I was very confused, I had always thought you couldn't see endo on an U/s scan???

The nurse was very vague and said she would speak with the consultant and i 'might' be able to 'have a chat' with him but I probably wouldn't get an appointment til April. I should go to my GP and get stronger laxatives. She said she would phone me the following wednesday after the clinic but I could email her too.

So, I have had no phone call from her, no response to two emails and when I phone her number the voicemail is full! AAARGH! and this is a specialist centre?

Feel so confused, no one seems to be able to deal with bowel symptoms and endo. I already spent years having CT Scans and colonoscopy and seeing bowel drs who failed to see anything and failed to think of endo. I self diagnosed via the internet in the end. Just feel SO frustrated, i am sure I have adhesions causing my bowel problem. Should I have another lap or just keep taking more and more movicol?

[squidgy]

Sorry to hear you are being messed about. I have no experience of UCLH so cannot help you there. Can your GP be any help? They may reply to them possibly?

As I understand it, an ultra sound will not show endo, but may show cysts. A Lap is the best diagnosis tool.

I too am having it affect my bowel and my last blog "As I Thought" explains how useless the gastro dr was. One of the ladies, Impatient, has put a link on it too about endo and the bowel. May be useful for you to print out and show to GP or whoever to help argue your case. Endo does affect the bowel..FACT! But it seems it is not being recognised as much as it should be.

I hope things get sorted for you soon and someone gets back in touch from the UCLH.

Best wishes x

[charlie83]

Hi there

Firstly, you are NOT alone in your experience of the UCLH endo clinic - it was weird reading your post as it felt exactly word for word how i felt during my time there.

I also had an appointment with them last summer, and found it distressing and utterly unhelpful.

I don't see how people saying how great it is helps you, either, as you are not making this up for the sake of it!!

I also self diagnosed endo about ten years ago and then this was confirmed by a laparoscopy and have been on various treatments and medicines since.

I had/have it on pouch of douglas and right ovary and also get all the other horrible associated pains and fatigue...it's not fun, is it?

I was also told the exact same thing you were, and also made to feel I was making a fuss when i was on considerable pain.

The nurses were utterly unhelpful, unempathetic and left me feeling even more hopeless than i had before the appointment.

I was also told they could "diagnose endo" through an ultrasound, which any woman who has done any reearch on her own condition knows that is just not true!!!

unless you have endo ALL over every organ, they cannot possibly detect it from an U/S!

So, no, you are not making a fuss and you are absolutely within your right to be hurt and frustrated.

I think it would be best for you to see a gynaecologist who specialises in bowel too??

is that an option?

i have bladder probs (recently diagnosed with IC as well as having endo) and found my way there by seeing a gynaecologist who also specialises in urology.

Do not give up!

there are doctors and nurses out there who will treat you with the respect, give you the time and offer you the right treatment which you deserve, they are just that bit harder to find. We have to be endo warriors when we have no energy, but you deserve to be listened to and helped, don't forget that.

Did they find endo on the bowel, or around it? it could be that an adhesion is pressing against part of the bowel and causing the symptoms you have been experiencing?

having another lap i know is a big thing, but it might be necessarry if you are in pain....at least then you'll know where you stand.

Also, i saw a private gynaecologist and paid for the initial consulations, then got the lap done on the NHS, if you make a loud enough noise they may well hear you and get you seen quickly.

I really wish you all the best, and be in touch anytime. You are not alone in this.

Lots of hugs

Charlie

[synnova96 in reply to charlie83]

Thank you, everyone. Charlie, sorry you had this experience too. I have to say a friend had a similar problem at UCLH with a breast cancer specialist nurse never getting back her.

It annoys me how it seems that going privately is the only way to get heard but even then there are no guarantees, which is another whole story (my last lap). I found an email address for the clinic manager on friday and complained and guess what? the nurse rang that afternoon. I still am not being seen by a senior reg until mid april. Personally I think it would be more sensible to get a colonoscopy in the meantime just to check for any nasties ( but 6 years ago they couldn't get the scope very far in as bowel was so narrow, ouch!!!) and then the result would be there when I see the reg. I had endo and adhesions in the pouch of douglas and rt uterosacral ligament in 2006 but the last lap in 2012 they just said 'diffuse endo.' I've now requested my notes from the previous private Dr. I think I'll see my GP and see what she thinks. It just all takes so ponderously long.

[charlie83 in reply to synnova96]

Hi again

thanks for the reply!

I think it would be a good idea for you to have a colonoscopy - i can imagine it's a scary thing to go through, but it could give you the answers you are looking for, or at least point the docs in the right direction?

i also had a colonoscopy years back, because i was also having bowel problems which in hindsight i think were related to the endo deposits, but this was before the endo was diagnosed.

when they say "diffuse endo" are they referring to a diagnosis or is that the treament they did? to diffuse it? sorry, bit confused!

i know what you mean by it taking so long, and being in pain it feels like forever, but i think if you ask for an urgent referral to a bowel specialist (from the GP) and explain how long you've been in pain they may be able to see you quickly.

After i went to UCLH i was very frustrated and didn't see any docs for a while, but then developed bladder probs last summer which have now been diagnosed as IC. I only managed to get it done this "fast" because i became as much of a pain to the doctors as i was feeling inside!! and demanded attention, which is not a natural thing for me as i'm not like that, but unfortunately sometimes we do have to shout a bit louder just to be heard and to get them to take action!

I am not certain if i am "allowed" to recommend specialists on here?? but if you want to PM me it's no prob at all.

Please don't give up - i know it seems a never ending battle, but there are answers and treatments out there.

I send you lots of hugs and support

Charlie

xx