Newly diagnosed and needing help

[Jenn2022]

Hi, I was diagnosed with a 6cm cyst which they thought might be cancer but now they're saying it's endometriosis. The gyne unit at the hospital have said they'll put me on the "very long" waiting list to see the endo team - in the meantime I should take paracetamol when the pain is bad and consider getting a coil. I've just been reading online about endometriomas (the cysts) and I'm completely freaking out. The web says this cyst is just going to keep growing - am I supposed to just wait for years for surgery whilst it gets bigger and bigger? I get hardly any sleep because the pain is always worst at night and has been getting significantly worse over the last few months. The web says the cysts rarely respond well to hormonal treatments so I'm just feeling really lost right now. I feel like I've just been discarded by the hospital and left to live in pain and misery. I don't know what to do. Is there anything I can do other than wait?

[Cockapoo-2016]

HiI am so sorry hear what your going through. Back in September 2021, I was in the middle of doing my adoption training course when all of a sudden I end up getting severe lower abdominal pains, the pain was so severe I couldn't move, my partner had to carry me to the car to take me to A and E the dispatch refused to send me a ambulance. I arrived in A and E saw a doctor he wasn't sure what coursed me to have severe pains and vomit. After 4 hours in A and E had blood tests and CT scan results came out that I had a Cyst on my left ovary. The next day I was referred to a gynecologist had a ultrasound scan and came back that I had a 8 cm cyst endometriosis. I was told by the emergency on call gynecologist what next more blood tests,than I got left hanging I asked the gynecologist what happens next, was told if happens again to return to A and E. Then I was told I will refer you to a gynecologist for more tests ASAP, two weeks went by then three etc I chased up the hospital complaint to PALS and then out of the blew I get an appointment from the gynecologist to come in a week. I went to the hospital I was told it could be cancer, more blood tests after I got my blood tests back my white cells where high so red flag and I was freaking out it's cancer. I was booked in for an emergency surgery after fighting left right and centre. I got my surgery 21st of October then it got cancelled, got told by the surgeon I am concerned that the cyst could repute and twist again like last time. If left any longer it can grow more, two went by nothing so I fought the hospital and then I finally got an appointment for surgery day on 2nd of November 2021.

I was in so much pain and fighting the hospital at the same time I reseched on the Internet and a help of a friend I was told to take turmeric for inflammation, omega 3 for pain, hormonal vitamins contain B12 , B6, B7 so helps to control the hormones so it didn't affect the endometriosis which in the end I was diagnosed with after they thought it was ovary cancer. If you drink coffee cut down, anything caffeine, I was on a endo diet which you can get books on endo diet from amazon which helped me which foods helped and which to stay away.

I also took Buscopan very good for pain when suffering with endo.

My advice is fight getting surgery, and keep fighting the hospital and GP it can grow if left untreated and can repute I am not trying to scare you. Please fight the NHS do not suffer. I hope I helped.

[Jenn2022 in reply to Cockapoo-2016]

Thank you so much for taking the time to respond and all your advice. I'm sorry for what you've been through. Has the surgery helped you?

[Cockapoo-2016 in reply to Jenn2022]

Yes surgery has helped me so much where I am pain free. Your very welcome xx.

[Heartof3 in reply to Cockapoo-2016]

Hi Cockapoo-2016, i hope you don't mind me jumping in, but i just read about what you said about taken buscupan & omg yes! I swear it helps me. Do you think helps the wind pains that can get involved with endometriosis flares? Not sure about you but i get alot of rumbling wind eith my flares. At first i thought it was ibs x

[Readalot2]

Hello Jen,

Sorry to hear of your bad experiences.

I went through a similar thing, I was in agonising pain and had a large lump on one ovary and the cancer markers were high, but after a scan they found out it was endometriosis, which was a huge relief.

I was very lucky as I was covered by a company private medical insurance and the gynaecologist who was treating me said I needed an urgent operation. I don't want to scare you, but he said it was urgent as they can rupture.

I am not sure if you are past your childbearing years, but I was 52 at the time and in my case he said it was better to take out my ovaries at the same time, as it would stop the endometriosis coming back (I have found since that this is not 100% guaranteed). After normal recovery time from the operation I felt great, all the pain had gone. 6 months later I had a few smaller problems again, but nothing on the same scale or pain level. 18 months on and I for the most part pain free, but I do have the occasional minor (by comparison) flare up.

So in my case I would recommend the surgery.

My advice would be to do one of two things:

1. If you can afford to go private do it - it is worth paying to be out of the pain if you can. I know this isn't an option for everyone and I was lucky to have a company policy. Even if you can't afford a private operation, which is the really expensive bit you can perhaps pay for a private consultation with a gynaecologist (which is normally no more than £200) and get them to put their recommendations in writing. You can take that back to the gyno you have been seeing. If an urgent operation it suggested, it will be harder for the gyno you have been seeing to send you away and leave you on a long waiting list.

2. If you can't go private I would ask to be referred to another gynaecologist for a second opinion and push for your surgery. Ask what happens if it ruptures while you are waiting etc.

I know the waiting lists are dreadful after covid, but 'he who shouts loudest' and all that. If you explain how much pain you are in and make a nuisance of yourself, you might get some help.

Good luck x

[Jenn2022]

Hi thank you so much for your reply. I am worried about it bursting and I'm feeling a bit helpless.

My GP (I don't have an actual GP, it's just whoever is available at the practice) referred me to the gyne unit at the hospital. And the gyne unit have referred me to the endo team at the hospital - so I don't have any point of contact or any individual I could speak to. I'm just being passed on from one dept to another. I am trying to get some quotes for private treatment and yes paying for a private consultant at least would be a good idea I think.