Beginning the journey

[LilGem88]

Hi all,

Apologies for the rambling of my first post but I was wondering if anyone had any advice for me please.

I’ve always suffered from painful periods - to the point where I would vomit with the pain in my teenage years but once started on the pill (Loestrin 20) this became manageable and I’d take pill packs back to back for convenience for years.

Fast forward to a few years ago and Loestrin was discontinued out of no where. I have been tried on numerous alternatives since with none even close to hitting the spot. My periods are heavier, back to being much more painful than before alongside period type pain throughout the month and I also have a lot of breakthrough bleeding.

My sister has got late stage endo and is currently awaiting a hysterectomy after running out of other treatment options now. I’ve watched her suffer since she was a teen and she is floored by her pain and rendered unable to do anything so I have so much sympathy for all sufferers.

After returning to the GP after yet another episode of extended heavy bleeding of no cause it was decided to send me for an ultrasound where the sonographer reported potential pelvic congestion syndrome - this got me a referral to the gynae consultant who told me that she doesn’t believe in pelvic congestion and she would be much more inclined to say I had endo given my family history and symptoms. Her treatment options were to have a baby right now, have the mirena coil or go into a period of medically induced menopause with a trial of injections. I walked out of the appointment a bit mind blown as I thought I was going for something else and then bang! it all got turned around. My partner isn’t keen on any of the treatment options having sat and googled them with me (particularly not the baby one!) but the consultant has called me back for another appointment next week so I feel under pressure to have made a decision on what to do next by then? My GP was no help at all and just said if the consultant wants to see me again then to go and speak to her.

Having sat and read through the forum I can see that you can have hardly any endo and be in excruciating pain or loads and not be in as much pain so I have tried hard not to compare my situation to my sister’s.

Any advice on how to approach the next appointment with the gynae consultant? I’m wary that I obviously don’t want to continue in my current position of pain, heavy bleeding etc. But I don’t know what to explore treatment wise? My hope was a referral to the gynae team would give me some kind of solution but I’m more baffled than ever!

Any help/advice gratefully received!

[Cailleach]

Hi,

This is like reading something from twenty years ago in terms of what your gynae has said to you. Have a baby immediately!?

If this was not a specialist BSGE clinic you were referred to, I think you should ask to be referred there. You can look up online to see where there is one in your area.

The main way of diagnosing endo is through laparoscopy, and they can excise endo where they find it. You don’t seem to have been offered this.

Don’t be pressured into a decision, check you are seeing someone who is a specialist in endo and make sure you have good pain relief right now, which your GP should be able to prescribe. Would your partner or your sister be able to go with you to an appointment for support( if that is allowed at the moment).

Hope things improve for you x