Looking for adhesion pain advice

[Pixie_Pumpin35]

Hello to you reading this 💛

I was diagnosed 2018, 4 laparoscopies (2 bodged NHS and 2 private excision). I am now left with painful adhesions in my pelvis where Endometriosis was removed. I’m taking 150mcg Desogestrel daily so I don’t have a period (I had an abnormal bleed last week for 4 days, first bleed since last august).

For pain relief I take 1g paracetamol x4 daily, 60mg codeine x4 daily, 500mg Naproxen daily, 20mg omeprazole daily, oramorph prn. None of this is relieving my pain.

I would like to know, as the majority of my pain is in my pouch of douglas area whether a hysterectomy would be a good option for pain relief? If I remove my womb and give more space for the adhesions behind it would it actually help to relieve the pain? I understand a hysterectomy (total or partial) is a big operation and have life altering systems on its own I’m just looking for ways to relieve my pain.

My GP isn’t knowledgeable about Endometriosis and hasn’t bothered to educate himself. I have tried seeking help through my local BSGE centre but the Endometriosis nurse and surgeon weren’t supportive and couldn’t offer any advice. I have been severely let down by the NHS throughout my Endometriosis journey.

Any advice/experience would be greatly appreciated from women who suffer the same pain location as me or who have had a hysterectomy, total or partial.

Thank you 💛

[Endo_Jaded]

Firstly, I’m sorry you have been let down by the NHS and the sheer lack of educational standard on a disease as frequent as diabetes now. There should be more educational training, more compassion and overall understanding .(celebrities endorsing endometriosis diets as total cures don’t help)

I too have been let down by the NHS something shocking, I’m on all your meds except I’m on a constant patch called bupernorphrine (apologies spelling) but still need codeine and paracetamol, sadly!

I’m demanding a hysterectomy, I’ve two children already I knew I had fertility issues as a teenager and was advised to conceive as soon as possible. But no one thought to explain or investigate! I’m riddled with endometriosis, deep, adhesions, fibroids, everything is like a glued mess and the adhesion pain I think is the worst it isn’t stopped or reduced with any medication and you can feel the tugging inside.! It’s horrible!

I want to find out if I should keep the cervix or have the vaginal cuff (I’m really worried about a botched NHS cuff) I don’t want to be a constant surgical scar map, in and out with zero solutions. Hysterectomy won’t cure it but surely it will alleviate some of the pains and issues?!

Women shouldn’t even be making the choice to have hysterectomies just to gain relief or some relief!! that screams poor health care!

Sending much love xx