Cystectomy Advice

[sarahfairbrook]

Hi all, I finally have a surgery date to get rid of my ovarian cyst! I’m very pleased, as it’s 8.6cm and making daily life painful to navigate. They’ve also said they’ll look for and treat any endo they find (still hoping to be diagnosed) while they’re in there.

I’ve got two weeks to prepare, any advice? ☺️

[Deb12345678910]

Hi. I do hope your surgery goes well and also a speedy recovery. Finally I have found someone in the same boat as me I got diagnosed last Nov with a cyst measuring 10.5cm at the time. I thinkbit has grown bigger since then.I have been in agony and have to take Oxycontin on top of my usual painkillers for breakthrough pain. I have just been offered an appointment after 6 months waiting so will be requesting another scan ASAP. Still not been put on waiting list for an operation. I live in Hampshire. You got your surgery really quick. Do you mind if I ask if where you are from and are you with a nhs hospital?The pain I can relate too and has made my life unbearable. This happened after a hysterectomy where they left the ovaries and tubes in and i have adhesions where the ovary is now stuck to my bowel as well as all my other bits. Sorry for going on but I feel the nhs has let so many people down since the pandemic. Kind Regards.

[sarahfairbrook in reply to Deb12345678910]

I’m in Lancashire and yes in the NHS. I’ve honestly just made myself a pest until they took me seriously. I’m on co-codamol which has done wonders for pain management but it has the caveat of being addictive so it might be worth talking to your GP?

I think they bumped up my case to urgent as the cyst is interfering with my kidney function. That and they’re concerned about “preserving my fertility” because I’m only 22, and want to check for endo.

I’m sorry to hear you’ve had to wait so long, but just keep pestering until they take you seriously! Good luck 😇

[EndoK27 in reply to Deb12345678910]

Hi Deb, I'm in a similar boat you and I actually live in Bournemouth, work in Hampshire! Small world! But yes I agree about the NHS. I was told I'd have to wait a year for a laparoscopy and cystectomy to get rid of my cyst. Haven't been "diagnosed" but I have a clear endometrioma and now I know it's been obvious I've been suffering for years. Due to it effecting my daily life and work, I sought help from a private clinician as the NHS was taking too long. A Dr who works nearby and is a specialist in endometriosis and excision surgery. He's top of his game that's the one I am seeing. I know I'm in the right hands. Hiwever.... it's private. He does work for the NHS as well but like I said, a year waiting list If you want any more info about him give me a message

[ChloeL934]

Hey!

I had surgery on 9th to remove a cyst which was 5cm & remove any endo found & dye test through tubes. I had this surgery done for fertility reasons.

I had a scan in July to measure the cyst which was just under 5cm & I had a phone call 2 weeks later to say that it look suspicious, and I needed bloods done & urgent MRI done, I was terrified. I had these done & results came back on the 1st September that it was just an endometroima & I was booked for surgery for the 9th & I’m so glad I had it done!

The cyst has been removed, endo was found in the pouch of Douglas which was also removed, my tubes were clear, she also said there was a lot of endo but not “typical” where everything was stuck together as she could move my ovaries etc. Touch wood I have been fine since surgery & im hopeful in the coming months I may have a chance to conceive naturally. I did still have pain a few days after surgery but the pain I used to get down my leg etc has gone & also my first period which was a few days after surgery was so different although still quite heavy nothing like before and no where near as painful.

I was a nervous wreck leading up to it & to be honest it wasn’t nowhere near as bad as I’d imagine it would be.

You’ve got this good luck & keep us updated xxx

[sarahfairbrook in reply to ChloeL934]

So glad you managed to get surgery and it wasn’t as bad as you imagined! I’ve just had another period the week before the surgery, and if nothing else it’s shown me just how much I need this operation. Ended up not being able to leave bed for two days 😔

Good luck with any future treatments!

[Deb12345678910]

Hi. Thank you for your reply. Funny you say about the kidney function as mine has come back in January with high levels of creatinine. Had blood tests today as my digestive system is playing up too. Your information has helped me alot. I do hope all goes well for you and you recover soon. Best wishes.

[chels0201]

I realise this post was 4 months ago! So I hope everything went well with your surgery! I was wondering if you or anyone else reading this that’s gone through the same were able to tell me how your recovery was after cyst removal? I had laparoscopic surgery for a 9.6cm cyst removal last week and although pain is getting easier i’m experience a sharpish dull pain on my lower left side which hasn’t seemed to of eased even with pain killers! i know it’s early days still obviously i’m just worried if they had missed anything although they said my left ovary looked healthy! (anxiety for you lol) ... Any advice on healing time? and when I might start feeling a little more back to normal!

Thanks!

[ChloeL934 in reply to chels0201]

Hey! I had exactly the same & was so worried it went away after a few weeks... it took me around 10 days to feel even slightly “normal” and a good few weeks after that to slowly ease back into things. Be kind to yourself & don’t over do things xx