Ovarian cysts & Endometrosis

[Lady1978]

Hi

Ive got a 10cm ovarian cyst on my left ovary, ct scan showed i had “several masses in both ovaries” so original op has been cancelled and I've been referred to another hospital- appointment is for 01/02/2022 which i know isn't too far away considering what alot of you ladies have/are going through

Ive now had MRI scan, this has showed, significant endiometrosis on/surrounding my womb and bowel with deep scaring and adhesions.

I have been constantly chasing the results and not sure what all this means, ive been told to read NHS endiometrosis only which i have,

Until i have my appointment next yr i have no idea of what stage if at all i have a stage of Endiometrosis.

Im in constant pain with leakage every day (i need to wear a pant liner every day - TMI - i have a brown /blood coming away which my own GP has seen) when on my period i am in so much agony and have to use max pads i feel i have so much coming away from me and even mid month when i’m ovulating its soo painful. The best way to describe my pain is like an old car style choke twist and pull - i fee my ovary is getting twisted and pulled towards my back and sometimes i cannot move with the pain

I know i need answers from the hospital but wondered if anybody else has been through similar and what to suggest

Again i know theres TMI but im getting desperate

Thanks for listening

[hrcArch]

Im so sorry you're having to deal with all this! First, I would suggest pushing for help with symptom relief between now and surgery - the symptoms are there, and they sound debilitating. They don't get put on hold just because the op has been delayed, so neither should assistance for them. Have you asked your GP about pain meds? How about hormonal treatments to try to curb your cycles a bit? If you've already asked them and they aren't pushing for that kind of help for you when you have those kinds of symptoms, it may be worth trying to find a different GP.

Second, if you haven't already, I would suggest also looking at Endometriosis UK, not just the NHS. While the NHS has good info, they don't have as many resources, and Endometriosis UK is created and maintained by a number of specialists in endometriosis.

And lastly, it's okay to not know what stage of endo you have - the stage usually does not equate to symptoms and vice versa, so it should have little bearing on how much help you receive between now and your op. The symptoms are severe, which is all they need to know to start helping you. Push for help from your GP and hopefully they can also advocate for you to gynae for anything they can't necessarily help with.

[Lady1978 in reply to hrcArch]

Thank you for your reply and taking time to read this

My GP has offered me the merino coil but tbh i dnt fancy that after reading about it i said I've suffered this long soo would rather continue with what pain i know than anything else.

Im hoping now the Mri results are in the specialist hospital will contact me sooner or maybe i’m just delusional lol

I will have a look through Endometriosis UK and see what that shows

Once again many thanks

[Noodle31]

I'm so sorry you're going through this. Firstly, I would push to have your consultation appointment moved closer if you can - the symptoms are not acceptable, and you have already gone through a cancellation. Having to endure nearly 6 months of that with no help, no appointment to discuss it or clear diagnosis? Not okay. Secondly, you need help with symptoms/pain. Have you considered Zoladex? It is intense stuff, I was on it for 9 months without HRT between surgeries - but it also helped with pain. Anything to do with womens health is constantly put on the back burner - but you have a right to treatment and help with this. If you haven't already, please seek referral to an Endometriosis Centre. They're the gold standard in the UK for treatment of endo.

[Lady1978]

Thank you for listening

My GP has offered an apology as she wasnt aware of how much i was suffering over the yrs

Ive only been offered the merino coil or deco something?? Im already a very large person soo dnt want to add further weight in as i have been managing the pain for yrs now and when reading up on the merina coil tbh i feel i went this long

My GP has said should any symptoms change let her know tbh i dnt want to be intimate coz its bad enough me seeing this coming away, so it then adds in to the depression and self consciousness

I got a ‘crisis’ pack of diazapan from my GP but tbh i feel my whole life is a crisis as this affects everything, my anti depressants have been increased to the max soo yes lying in the couch with chocolate is my go to atm not good

Thanks again for listening