Advice needed

[victoriaat1611]

I’m struggling. I had my diagnosis just under a year ago with apparent stage 1 endometriosis with a lot of scarring around my left ovary and fallopian tubes.

I feel messed around with the consultants and doctors in charge of my care. I had my laparoscopy in July and was back again in hospital with chronic pain due to cysts in September. Was told my the doctors then have a hysterectomy, a baby or try prostap. Was given no information on it and was told to google it.

I took my chances on the prostap and finished my course and throughout my last 2 injections and now being injection free for 2 months I’m suffering with the most horrendous back pain on top of all other Endo symptoms. It genuinely feels like my lower pain is swollen. Got to a point today I couldn’t even get myself dressed and had to have my partner cloth me.

I’m lost for what to do or even what to say to the health care professionals in my care as I’ve been fobbed off so many times.

Does anyone have any advice or ideas on anything I can try to improve my circumstances?

[Lindle]

It is so shocking that doctors are still relying on myths such as have a hysterectomy or a baby which was the advice to me over 30 years agoDic you have a scan before the lap?

[victoriaat1611 in reply to Lindle]

The scan before my lap was 6 months before. I was last scanned in November, they claim they couldn’t see anything but there’s talks of another lap being booked in

[Lindle in reply to victoriaat1611]

If it was a general gynaecologist who did your lap they often miss deep endo. The most common type of endo is on the pelvic lining (stages 1/2) and traditionally 'text book' representations tended to just describe the many ways this can present, but deep endo is in the form of adhesions/fibrosis and this is often written off as 'just' adhesions. Deep endo most commonly affects the left side and will usually involve the left ovary as well as areas the gynaecologist might not have looked. Back pain is common and can refer to the leg.

Obviously it can't be known if the stage 1 is accurate but the other problem we have is that regular scanners only look at the ovaries and uterus, they aren't qualified to look for deep endo.

When having ultrasound it's important that it is done by someone who is skilled at checking for the 'sliding sign' which is a good indicator of deep endo. I'll attach a link below to a previous post on this. x

[Lindle in reply to victoriaat1611]

healthunlocked.com/endometr....