Consultant won’t operate for pain.

[Pecanpie11]

Hi All, I hope everyone has had a peaceful weekend!

After 20 years of unbearable pelvic pain throughout my period and ovulation and periods so heavy I daren’t leave the house, I was finally deemed ‘old enough’ for a referral to the gynaecologist (I’m 31 and have been told my entire life by medical professionals that periods are SUPPOSED to hurt and there’s no point investigating them unless I try to conceive and struggle). My periods and pain have literally obliterated my life. I struggle to hold down a job as I’m often absent with debilitating pain, or need to take strong pain meds that leave me exhausted and ‘out of it.’

Last month, the gynaecologist agreed that I likely have endometriosis and pushed for me to try the minerva coil. I refused as I’ve tried a number of birth control options in the past and whilst some have taken away the heavy bleeding, they have no baring on the pelvic pain during the month and after exercise and/or sex. He explained that unless I was trying to conceive, they wouldn’t consider performing a laparoscopy for diagnosis or pain relief, as the laparoscopy is used (according to this clinic) only to create a window of opportunity for conception.

I was furious. I explained the situation with my pain and that I was desperate for an official diagnosis and the opportunity to see if excision can help me. I told him that I did hope to conceive in the future but my priority right now is pain management. He said if this was the case he would sign off on this one laparoscopy and excision, with the goal of creating a window for conception. I’m now on a 35 week waiting list. I have no intention of using this ‘window’ to conceive. I just need a chance to alleviate even some of the pain.

My next worry is, if endo is found and excised, if it grows back it is unlikely my local clinic will permit a follow up surgery, as it is only for conception and not pain.

Is this normal? Is this the general use/approach of endo clinicians? Why are women’s bodies only worth treating as a means to aid reproduction?

[Lindle]

This is entirely incorrect. Treatment is for pain and/or infertility. Is this in general gynaecology and have you had a scan?

[BloomingMarvellous]

Backing Lindle on this one. It’s rubbish. Is this also the surgeon who will be treating , are they qualified endo surgeons and lastly have you asked for a second opinion ? I would be wary if this is the same person doing the surgery as reading between the lines I can’t see them also being endo specialists….

[Washington1]

This sounds unusual. I had a laparoscopy in my mid to late 30's due to excessive pain and symptoms. I would go elsewhere for another opinion. I also refused the mirena coil as I had not responded well to other pills, etc and did not feel right about it. I would recommend getting a tens machine, if you don't already have one, as these can reduce the amount of time you spend in agony. Just use it like meds, in that you put it on at the first twinge of pain so that it has the chance to work on the brain-pain axis. Hope you get the help you need soon x

[Endofitall]

Codswallop!

Infertility patients are told the exact opposite that surgery has no evidence in helping fertility and is only done if severe pain etc. Find another specialist xx

[AllthatGlitters]

Morning i agree with all other posts. What you have been told is incorrect. I have had several surgeries for my endo / adeno to help with pain, fertility has been discussed with me but it’s not the primary reason for surgery for me & I have never felt pressure to have surgery to preserve or help with fertility. Are you able to change consultant? Or have a private consultation? Mine cost £200, you can then use the NHS for any treatments x

[KittyTherapy]

Agree with others, this is complete rubbish. If I were you, I would get a second opinion. I am 27yo and had my op last month with the main aim being to reduce the pain and symptoms. I am not currently trying to conceive or have imminent plans to. So sorry you've had this experience. Please look after yourself.

I would be wary of letting this clinician operate on you. Not sure if this is something you have considered but it sounds to me like medical negligence- failure to diagnose and treat. If you want to go down a more formal complaints / claims route then ask to see your health records.

I know it's exhausting but keep pushing for yourself as nobody else can x

[SeaHorse6]

That's infuriating. It sounds like you have been so badly failed by the doctors you've seen. I agree 100% with your last sentence. What about your quality of life?! I so hope you can find a way to see a different consultant/specialist, there are some decent ones out there who do understand

[Emmaja_ne]

no that’s not right at all