Advice on what to do next!

Hi all, hoping you're having a pain-free day!

I'm hoping to pick your brains or have some advice one feedback on what others have done in a hopefully similar situation.

I had my laparoscopy mid December 2016 where I was diagnosed with very superficial endometriosis on my pelvic peritoneum and uterosacral ligaments. Prior to my surgery, the consultant had advised that they would excise any endo that they found, however after the surgery the Dr came round and said they made the decision that they would leave the endo as they were concerned that removing it could lead to more scar tissues and adhesions. I was told that I needed no further follow up and was advised to stick on the pill (which I've been on since I was 15 due to horrific periods) until I wanted to get pregnant.

About 2 weeks after this I was back in the same awful pain as pre surgery and was struggling to return to work or do anything which I normally enjoy, such as the gym. I phoned the nurse at the hospital in a bit of a state, who then referred me to the endometriosis clinic.

I've just had my clinic appointment today, and I'm in a bit of a confused state as to what to do next! The doctor has said that my 2 options are to stay on Microgynon and take 4 months back to back. I have often taken pill packs continuously due to awful periods so this isn't too much of a revelation. They said the only other option is the Mirena coil. They have also agreed to refer me to the pelvic pain consultant to see whether there are any other pain management options.

Just looking for some advice/similar stories if anyone has been in a similar situation as to what you did next or how people got on with the coil? I know it works well for some and not so well for others, but I think it would be so helpful to talk this through with others who 'get it'.

Any response would be greatly appreciated, I really feel at such a loss as to what to do.

11 Replies

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  • Is this at a bsge centre?

  • Hiya, yes it is a BGSE accredited centre

  • It is a tricky situation. We all know the disease is a pig and that surgery is hit and miss and if a bsge surgeon has said now isn't the right time to operate I would personally be inclined to go with that and try the mirena.

  • It really is a pig! Think I will continue to read a bit more about the Mirena and then perhaps will have to bite the bullet and give it a whirl! Thanks for replying Jo

  • FWIW I have endo on my right US ligament - the nodule is quite large now (a couple of cms) and I am due to have surgery next month to have it removed as part of a hyst +BSO. It's been left untouched in previous surgeries to minimise scarring so that this final surgery will be as uncomplicated as possible.

  • Hi Becky, if this wasn't at a BSGE centre then go back to GP and get a referral to one. If you search google for BSGE there is a list and you can decide who you want to see for the referral. It is your choice who you see and your GP cannot refuse to refer you.

    Just seen reply . In that case get a second opinion.

  • Hi Jean, thanks for replying. I'm definitely considering exploring a second opinion

  • I'm not doing well on Mirena. Everyone's experience is unique to them and I would say it's worth a try but I've had near constant bleeding/spotting for 6 months and I'm starting to feel quite low. I think mine may need to be removed 😞 Xxx

  • Hi Janine, thanks for replying. I'm sorry you're having an awful time with the Mirena. It's so difficult to know what to do sometimes x

  • Everyone is different on mirena so maybe worth a try. Also push for the pain management. Sad to say the obvious but as this route is cheaper than surgery most BSGE clinics push you to pain management first, and then maybe do surgery, which they then admit was the only way they could ever treat endo!

    I've been through all the pain management, including nerve block injections and nothing worked so I pushed for surgery and am now awaiting my date for excision, so stay strong, and just keep pushing. The endo you do have will not go on any treatment offered, it may stop growing, but it won't disappear.

    Good luck.

  • Hi Becky_e

    Our treatment pack includes other treatment options that may help with pain. Hopefully you find something that works for you.

    endometriosis-uk.org/sites/...

    Louise

    Endometriosis U.K.

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