Help!!

[dogdaft]

Ladies, I need your help!

Just off the phone to my surgeon, I feel very dismissed. After my surgery I was shown pictures of 2 spots of endo on my pouch of Douglas and was told my bowel was adhered. It was all very unclear, I didn’t know the method of treatment, stage and exactly what my bowel was adhered to. My discharge letter said “endometriosis found and treated” and my letter to my doctor said “2 spots of endometriosis on the ouch of Douglas found and treated”. No mention of my bowel.

When the surgeon phoned she said, “you had 1 spot of endometriosis and your bowel is adhered to your side wall”. She left it untouched. She said to “forget” about my bowel and not get hung up on it because I’m complaining of severe pain with BMs. She stated she “burned” the patch away and that’s me!! No further treatment. She told me to deal with the bowel adhesions with regular laxatives and lots of water. I’m constantly constipated and sweating/crying with BMs!! I’m so frustrated.

[luthien]

Ahh that doesn't sound great

Can you get a referral to another specialist; a second opinion / method of treatment may be useful. Unfortunately it's the type of thing we need to push for until we find the right doctor that's willing to listen and help us.

It seems to be that your doctor isn't consistent with what she's saying; one thing in a letter and another on the phone. You need to know what you've had done and how much endo there was. You mentioned burned away - that's one method for treating endo - it takes the first few layers off, it's a quick op but leaves the endo still there underneath, thus regrowth can be quicker. If you can, and they will do another op ask for excision - this is the best method as it removes the endo and some surrounding tissue so symptoms are much improved. You need to have the adhered bit unstuck, as it can cause bowel complications later and can make symptoms worse; unsticking it will most likely help your bowel movements and pain. UK diagnosis of endo doesn't include stages, stages are a US basis, the UK grades it as mild, moderate and severe. Stages refer to the number of patches of endo and the number of adhesions, but since patches can vary in size and adhesions in severity the UK uses descriptions.

Hope you manage to get a second opinion xx

[Starry]

Hugs. Were you seen at a bsge specialist endo centre? You should normally be where there is bowel involvement. Surgeon there have extra specialist excision skills training to handle complex cases involving other organs.

This is the nhs treatment pathway link. I suggest that you take it to your gp and get re referred to a good bsge centre. Link to find them also below.

Dont be fobbed off, adhesions tend to tighten over time and depending on their position, might constrict the bowel further. You really need a recto vaginal bowel endo expert to assess you and guide you in what options you have. It may be still that bowel survery to unadhere is not advisable or too risky as every case is unique, but it might also simply be beyond the level of skill and training of the surgeon you had and them be reluctant to admit it. i would definitely get a second expert opinion knowldgeable in bowel endo so you have peace of mind. I actually didn't want to have bowel surgery but ended up having to to protect my bowel wall. I can now poo without fainting as my bowel is not distorted out of position and glued to my vagina wall.

Severe deep endo definition and treatment path

google.co.uk/url?sa=t&sourc...

Specialist endo centres

bsge.org.uk/centre/

Good luck hun, take care of your self.

[dogdaft in reply to Starry]

hello hun,

Thank you so much for all of your amazing information. So she stated that it is just 'cling film like' adhesions and they're not tight, thick ones so she can just leave them. her exact words were not to get 'caught up on it' and it's 'very common'? I certainly know my chronic constipation, bloating and severe pain with BMs is not normal! is it classed as bowel involvement if there isn't endo directly on the bowel and only adhesions? I don't know if I'll be entitled to be seen at an BSGE centre if my bowel didn't actually have endo on it. I know that my pouch of douglas did. I just feel so lost!

C x

[Starry in reply to dogdaft]

Im not sure hun, i can only describe my own experience. But i would try given your distressing symptoms. Severity is not just about quantity. You could contact the bsge sectretary describe circumstances, your symptoms and concerns and check if they would accept the referral first? Or a one time private consult is usually under 200 quid and i understand sometimes consultants then agree to add you to their nhs wait list.

Mine was unequivocal as it was a large 3m5cm rv nodular tumor at risk of growing through the Bowel wall, (and which had destroyed 4cm2 of my vagina) but there was also concern over the distortion caused by my bowel pulled out of place into a c shape by endo adhesions and being constricted. I 'only' had a couple of shallow bladder and uterosacral patches and only 1 nodule but they still wreaked havoc and rated as severe / stage 4.

Hopefully it is the right decision by your surgeon but if it were me, knowing what I know, i would definitely want that validated by a bsge expert surgeon.