I have suffered with cysts on & off for about 20 years. Aparently they're hemorrhagic cysts, that burst on their own. But this cyst had been niggling away in my right ovary for 2 +months & it's so uncomfortable 😖
It seems these cysts are getting more & more persistent. I can't stand them 😢
I'm on the waiting list to check for endometriosis as I've had chronic pelvic pain that was cyclincal but now persistent & ruling my life for the past 4 years.
It's not fair how our pain is over looked.. take our meds & just get on with it 😏
Does anyone else have experience with these cysts?
Any advice is very much appreciated 💕
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Heartof3
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First off, I’m so sorry to hear you’re in pain and suffering with these cysts. Just remember there’s always a listening ear on here.
I suffered much of 2021 with haemorrhagic cysts so I understand the pain you’re going through. Your situation is very similar to mine actually, hence why I was drawn to your post!! I won’t go into complete detail about the polava of a 10 months I have had but will tell you about my haemorrhagic cysts and where I am in my Gynae journey today!
I started with a pulling/tugging feeling in my right side in March 2021 and was sent to the emergency surgical unit in the hospital for investigation. They found a 7cm cyst in my right ovary and said just go home and watch and wait for 3 months. I was obviously very annoyed/upset by this. The pain continued in a cyclical pattern, easing after my period for about a week then kicking off again. A follow up scan 6 weeks later showed it was haemorrhagic (which explained the excruciating pain I had been in not long before this). It was at this point I got referred to Gynae.
I had multiple scans throughout 2021 which showed cysts coming and going and I put a lot of my pain down to these cysts bursting on themselves. But my pain was getting worse, instead of it being cyclical it was daily, it was in both sides of my lower abdomen, I was finding it difficult to go to the toilet sometimes as well. My GP came across as thinking it was in the hands of Gynae now so they focused more on management of symptoms, so I was on ibuprofen and cocodamol for the pain and Cosmocol/lactulose for the toilet issues. I did research endometriosis and spoke to the GP, who was extremely reluctant to even consider it as a diagnosis. It seems when it gets mentioned GPs tend not to take it “seriously” because they think women are being dramatic or they try to avoid it because they don’t know much about it and don’t want to come across incompetent.
I had the medications but also did home remedies like hot water bottles and I have an amazing pillow that’s like 1.5m long that I can just lol on or hook my leg over if I need to take the pressure off my belly. I will be honest and say I am nowhere near as active as I used to be and the weight I have gained hasn’t helped my self esteem with everything.
I had a call with the gynaecologist in August and it was agreed I would have a laparoscopy to see what was going on and remove any cysts if there were any. I had my laparoscopy last week and they said my ovaries and tubes were fine, but they did find endo in my rectovaginal pouch. Unfortunately because it’s so close to my bowel the consultant couldn’t remove it and it needs an endo specialist to look at. So even though I have a diagnosis, nothing has been removed and I’m still trying to manage my pain and symptoms.
My advice overall is to keep being persistent with the GP and Gynae if you’re under them and mention endometriosis. If you’re finding you’re less active and don’t want to be I’d suggest walking and yoga for now. Definitely invest in a giant pillow as that has been my saviour.
And also remember that there are thousands of women here as a community ready to listen.
I would definitely speak to someone about expediting your referral for endo, ask your GP to write a letter saying your symptoms are much worse and that should bring you closer to the top of the waiting list!
I hope me sharing my story helps you see there is a light at the end of the tunnel somewhere!
Although I wouldn't wish this on anyone, it's nice to know I'm not alone.
I am sorry you are going through all this too 😔 bloodynightmare isnt it.
I am currently waiting for a phone call back from the gp, I rang them this morning & was told I will get a call back by this afternoon... I'm hoping I'm not fobbed off again.
Whenever I've had scans before, the gp looks confused & says "well they shouldn't be causing this much pain as they can be quite common, some people dnt even know they have them !)
Statmemts like that really upset me & make me feel like I'm going crazy.
I know my body & I know something's not right.
I have been on the waiting list for a laparoscopy for just 2 months now, I am told it's atleast a year wait 😔
Same as you, it's limited What i can do in terms of activities. I can only walk to the local shop & even that gives me so much uncomfortable pressure in my bladder area, it's awful. Litrally rules my life.
Omg yes, hot water bottles & hot baths are my best friend! Only best friend really, as no-one understands sadly 😏
But Thank god for this group!
I will be investing in a bigger body pillow 😊
Bless u, so are u still waiting to hear from the specialist?
I agree, it’s nice to know the online community is here!! I hope you managed to speak to your GP this afternoon and get somewhere with them. That the issue with cysts I think, because most people don’t know they have them I think it’s assumed they don’t cause pain. But when people like us are in pain, we get an awfully confused GP wondering what the hell were going on about 😂. In theory they should really say, well this is unusual for cysts so it could be something else, but alas they just sit there all confused and because they don’t think to mention endometriosis or any other Gynae issue, they’d rather us feel like we’re going batty 😂
I agree I felt like o was going mad too! And it’s hard explaining it to people who don’t suffer with it either! Like my family, who are so loving and supportive but at one point did say are you so used to the pain that you just think it’s always there but it’s not 🙈 I wish 😂
Yes it really was a feat to get this far. I mentioned endo to the GP and the gynaecologist and their responses respectively were “I wouldn’t like to say that for definite or not because it needs a gynaecologist to diagnose it so we’re just going to focus on pain management” and “you have the Mirena coil so you shouldn’t have endo” 🤦🏼♀️.
I am now waiting to hear from the endo specialist. The consultant said she would write to him and it looks like it’ll be about 6 months by the time I speak to him 🙄 then the nurse said my GP would have to refer me and it could be even longer 🙈 SO my plan of action is to call the gynaecology department to see if the consultant has written to the specialist (probably next week) and if not, speak to the GP about doing a referral. I have booked a call with the GP for mid Feb in advance because it’s a 4 week wait for a GP appointment at my doctors!
You’re so right. It’s such a battle!!
But I’ve found that taking charge of my own health and being annoyingly persistent has paid off.
If I were you I’d definitely mention an expedite letter to your GP to request your laparoscopy be brought forward, especially if you’re in that much pain getting to the corner shop 😢 it’s so debilitating and it’s so hard to verbalise what’s going on to people so it’s nice to come online and speak to people who get it ❤️
Bloody hell, u been through it too 😞 Bless u.It's so crap we have to go through this.
My gp appointment went well, he asked me to go to the surgery to check me over.. He checked my urine which was clear. Went through my history Felt my tummy. He said it's all pointing towards endo. He thinks i might have scars from an infection of the endometrium which occurred after the birth of my son & turned into sepsis, I've had non stop pelvic pains which have got worse since.
He's wrote to gynea to try & bring my lap forward.. Hopfully this will help?
He's also refferd me for a scan & to have bloods taken.
So all in all a positive appointment.
It's so nice when we finally get heard & taking seriously aye 💕
Hi, Yours and Jodie’s symptoms are similar to mine too.
I’ve got haemorrhaging ovarian cysts and last week I was diagnosed with endometriosis by a gynaecologist.
Unfortunately the NHS waiting list is 12-18 months for a laparoscopy in my area which will obviously give a definitive diagnosis and treatment.
However I have been assured by the gynae that they have ruled out every other possible diagnosis and my symptoms only fit endometriosis. They said that the haemorrhaging cysts are caused by the endometriosis.
Other than hormonal treatment and pain management, there isn’t anything else that they can do for me until the laparoscopy comes through.
Unfortunately the situation I am in means hormonal treatment is not an option currently and pain management is tricky because I need to be able to work and drive etc. This is emotionally hard because I feel stuck, unable to choose these treatment options.
It has been difficult emotionally to deal with this life changing diagnosis as I was expecting some sort of short term diagnosis. I can really empathise with being made to feel like you’re being overlooked. I changed hospital and got diagnosed within 24 hours so you could try that. I went through A&E and they took me extremely seriously. I cried with relief.
I’ve just read your other comments and realised you’re already waiting for a laparoscopy. Yep it is a waiting game isn’t it. I am going to try and do everything I can that’s non-medicinal to help in the mean time. Good luck x
I know it’s funny to read what someone else has written but you could have written it yourself. I’m currently reading the Endometriosis UK book. It’s really helpful and has a section on everything. I’m only reading the parts that are relevant to me now so I don’t scare myself going down a dark rabbit hole! Have either of you read it too? X
Ah that sounds interesting! I've not heard of this book. Might have to look into that, considering all I can do is think about endo, night aswel have a good read on it all xx
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