Cystocele and poss enterocele. Please help I am scared

[UKlady1001]

I have had problems with constipation for a long time which I am taking movalot for now which is helping however:  I now have cystocele and I also suspect I have an enterocele.
My GP has never heard of an enterocele and tells me there is no such thing as a prolapsed small bowel and my urogynae only seemed to look at cystocele and uterus and told me he thinks I should see a bowel Dr.
I have pain on urinating ( no infection found ) expecially after bowel movement, low back and low abdominal pain.  It can be difficult to start to pass urine - some retention plus loss of sensation as to how full my bladder feels as I feel something is there all the time.
I cant eat much and have lost wieght due to eating making the bloating, dragging pain and low back and abdominal pain worse like it going down onto my bladder and uterus( and vagina) in a V shape.  The pressure of anything in my bowel builds up over the day.
I get very tired.
I have low thyroid - levels are ok, suspected sjogrens syndrome, dry eyes and mouth, low iron, vestibulitis, vulval dermatitis and reflux.

I need to find out what is wrong and know what to do about it.
My GP is un nerving me due to telling me no such thing as enterocele and my urogynae is un nerving me due to not being able to tell what is happening to bowel.
I cannot live like this is pain, laying down all the time.  I have 2 children on my own and last week felt pretty much like I didnt want to be here any more.
I am not good with cystitis type pain.  I had it a lot when I was younger and I couldnt handle it.
Do you have any advise and know any UK doctors in Milton Keynes Buckinghamshire area or slightly wider area to me you could tell me about.
No one has a good story or outcome about mesh either.  Even my GP said to say clear of them and my vaginal skin is not so good for passary.

I would be very grateful for any help you can give me.
Thank you

[sherrieP]

Got a couple of feeds for you Val, will send them to you in a private message.
:)
Sher

[sherrieP]

I am continually amazed that the urogyns in UK do not address rectocele, I know other women in UK who had this exact dynamic, a gastro is called in to address back compartment. In other countries urogyn addresses all 5 types. Best scenario I guess will be to find a urogyn/gasto combo as you've mentioned is done in teaching hospitals. Big concern however is WHO is doing the procedure. Please clarify prior to any surgical procedures that the gastro teacher will be doing procedure, not the student. This is an extremely intricate area, it truly takes an expert to get it right. Student drs need to learn somehow but I feel if we are going to be worked on by students, we at least have the right to meet them, ask them questions, and find out how  qualified they are. Again speaking to a PT may give you a direction, I'm so hopeful my contact will come up with a name to share with you. I'll let you know as soon as she does Val.

Sher

[UKlady1001]

Ok Sherrie

Am thinking London or Oxford right now.  
I haven't found any urogyn's who also deal with bowel but some do work with bowel consultant teams especially in the teaching hospitals.
Some of the urogyn's in the teaching hospitals do not state that they do pelvic prolapse operations though ( they say a lot about urinary and gynae but nothing about prolapse ) but I have found one that states they do pelvic reconstruction.  It is over an hours drive from me or the same by train for the other ones but I feel I need to find the right consultant.  

It is a bit worrying your friend isnt finding anyone but if they find any information I would be grateful.

Thank you
Val

[sherrieP]

Hi Val,

I'm sorry I can't get any definitive info for you, seems pelvic floor health practitioners in that area are scarce. Contact your local hospital and ask for the women's health clinic, once you get them on the hook see if they have any recommendations for a women's PT or a urogyn. I'm hopeful they'll have a recommendation for you. My friend is still looking but so far dead ends.

Sher

[UKlady1001]

I am seeing my GP today Sher with my consultants letter.
Please let me know when you hear.
Many thanks

Val

[sherrieP]

I'll give a shout as soon as I hear from my connection!
Hang in there Val.

Sher

[UKlady1001]

It seems the urogynea I saw doesnt know about the bowel side though.
When I told him about the pains in my back, lower abdomen, pressure on bladder as well as the lump into my virgina from my bladder side, cystitis feelings and bloating etc he said that I needed to see a bowel Dr and that the bowel wasnt his area.  Pains in  back etc etc get bad when standing or walking round.

Sorry if I am repeating myself.  It is going round and round in my head.
It would wonderful if you could find me a recommended Urogynea that does all for me to see.  I live in hope.  I could go as far as London but as I am on my own the nearer the better to where I live.  I am prepared to do what I have to to find the right Dr Sherrie.

Thank you again for helping me.
Val

[sherrieP]

Hi Val,

So infuriating that a dr would laugh at questions about prolapse-you truly need to find a different GP for general needs beyond POP. It is a urogyn you should see; this is the specialist for all pelvic floor disorders. Down siede is there aren't many of them in the UK. I have my source (who lives in Belgium but is from the UK) digging for recommendations for you. May take a few days. We talked about her finding a good physiotherapist if she can't locate a reputable urogyn in your area; often the PTs know who the good drs are in their area.

Hang in there a bit longer.
Sher

[UKlady1001]

Thank you Sherrie

The consultant I say was a urogyn but as you say he doesnt feel like he knows enough.  I would very much like to know the right consultant to see on all 5 prolapse fronts and thank you very much for your reply.

I am due to go back to my GP tomorrow and am very worried as to how to approach this as I cannot even give a name of a Dr I would like to see and my GP just laughed when I spoke about Small bowel prolapse etc

I look forward to your answer and still feel very scared.

Val

[sherrieP]

You absolutely need to find a different urogyn, I've heard too many disturbing stories regarding women treated by bowel drs in UK. That your GP has never heard of an enterocele is a flag; that your urogyn wants to refer you to a bowel dr is a flag as well. In general POP should not be addressed by a PCP or gyn, should be a urogyn and a good urogyn can address all 5 types of POP. Difficulty urinating indicates a more advanced POP scenario.

Please optimize thyroid levels, low thyroid by itself can cause constipation which will not help the POP related constipation if you have a rectocele.

I'm going to shoot an email to a connect of mine who is from the UK to see if she can recommend a urogyn in your area. Hang in there a bit, I'll get back to you as soon as I hear. Also I'm going to have this post transferred to the Pelvic Organ Prolapse Forum.

Sher