Post to vent from feeling let down.

[Endoholllou]

I’ve had symptoms since the age of 14 and got diagnosed at the age of 28 with them saying at that time there is nothing we can do.

It was a battle to get that diagnosis, with being told it’s IBS, anxiety, depression, food allergies, it’s normal and the list goes on. When I went back to the doctors to ask for help again at the age of 30 I had to restart my journey because again no one believed me.

I had doctors rolling their eyes at me when I told them the amount of pain I was in numerous comments of “oh it sounds like Endo but very unlikely” Even after a diagnosis.

Go for another round of ultrasounds for them to say they can see the Endo and it’s time for surgery.

At the age of 33 this year I had my first surgery, whilst coming around from anaesthetic my surgeon started to talk about what happened. I have zero recollection of this and the only word that I can remember is hysterectomy. I have asked numerous times for my surgery notes but have gotten no reply. After the surgery I have had zero aftercare.

my stitches were meant to be dissolvable but after a month and different doctors appointments to check they were still in. I went to a&e because one started to bleed I was told they were not dissolvable and needed to be removed.

Whilst in the surgery I had the Mirena Coil fitted, they told me this would be the best option. ITS NOT. After two months I felt something wasn’t right. I was in a lot of pain, heavy bleeding and lots of bloating. I was told this was normal.

it got to 5 months with these symptoms and demanded it to be removed. Doctors wouldn’t do this. I had to book into a sexual health clinic to get it removed for them to tell me it had dislodged in my cervix and that’s why I was in so much pain.

Again I had no follow up appointment to check it had been fitted correctly.

My Periods didn’t return after this and I grew concerned and got another GYNE appointment. This Gyne was actually one of the best I’ve seen. I cried through out from someone agreeing with me about everything I felt. I asked him to see my surgical notes because the surgeon had still not got back to me. I was told my notes are not on file and can not be found. Why? This Gyne then sent me for a scan to check what is going on with my periods.

It has come back that the Endo is now inside my left ovary. I had an appointment booked for a follow up on the 7th October. Today they cancelled that appointment and said the next available one is the 16th of December.

This has tipped me over the edge. Why do I have to constantly fight for my health, and when am I ever going to find a solution. Medication doesn’t work, hormone treatment causes my mental health to drastically dip. Just don’t see a light at the end of the tunnel.

[Hello33]

Hi I'm so sorry with what your going through! I understand completely. I had that coil fitted for 5 years it made me go nuts. I'm waiting for an appointment it's not till May next year which like you will probably be pushed back! I know how you feel about the light at the end of the tunnel I have found being on here helps a little. I wish you all the best x

[Cambk]

I’m so sorry you’ve had such an awful experience, and while mine isn’t the same, it’s eerie how similar some of it is.

The part about the surgeon debriefing while you were still coming down from anaesthetic, unable to recollect anything and the the fight to get your notes (I did eventually get mine months down the line but the consultant was very abrupt about it saying he already told me everything.).

I’ve now had an appointment with a specialist (which I waited 14months for) and felt so listened to and she explained my specific areas affected in detail and why my pain is the way it is.

I wonder how many of us have to deal with this before we get to the good ones 😔

Keep going, you’ll get there even if it seems impossible sometimes x

[Bakewey]

I agree with the other two replies, why do we need to keep fighting for answers?

My situation had many similars. I’d suggest booking a private consultation and tell the practice in advance that you want to have your notes reviewed - this I what I did as my results were not forthcoming and my mind was racing about what it could be! They private practice could not get the paperwork read for the first meeting, so they scheduled another the following week with a promise to have the paperwork ready. They delivered. It cost about £150 - I left the room with a full understanding of what was going on and what my next options were.

I hope you get some relief soon.