Does anyone else here suffer with Ovarian cysts??

blue_monkey_2

Just feeling totally down and fed up and needed someone else to talk to.

I've not been diagnosed with PCOS but each month when the follicale releases and egg it does not burst so keeps on groing and growing. I already lost one ovary through a 10 cm cyst (which was diagnosed for 8 months as a 'pelvic infection')

Now 2 kids on I have taken almost every contraception available that stops me ovulating. The pill I am on now has started to stop working and I feel like crap. I am so snappy with everyone, I've snapped at a few people this week and I am embarrassed but it just happened. I am not even into 'PMT' week when people expect it (LOL).

I've got bloating and tummy pains, I've put on about 5lb in 1-2 weeks and not trough eating as I do not feel hungry, I've just got that nauseaus feeling and I can feel things 'going on' - if you suffer from this you'll understand. I can even tell the time to the minute the cysts burst because of the agony. I cannot even wear trousers around my tummy because of the pain when I have the cyst/s. My boobs feel like they are being stabbed with red hot pokers - I cannot even lie on my front.

I do feel that the doctors are totally ignorant of my condition - I've had 2 laparoscopies at the wrong time of the month so the cysts were not there. However, to get to the bottom of it I have paid for scans at a private hospital which showed the cycle of the cysts each month. This was the only way due to the 6 week waiting list for an 'emergency' scan. Then they get it at the start of your cycle or towards the end when the cysts have gone and there is nothing to see so they send you away.

I wondered if anyone else suffered the same and what you do about it.

lisaloo1977

Big hugs to you.

I have suffered the very same problems as you since i was 13 years old, i am now 31. I had my left ovary removed when i was 14 due to two cysts one the size of a tennis ball and one the size of an egg on it and the damage that they had done. I have since had another that had to be removed from my right one, but was lucky enough not to lose it and have gone on to be a mother.

I suffer terrible pains that are like a red hot twisting inside me, i am often stopped in my tracks by the pain. I suffer irregular periods and when they do arrive i lose very heavy and large clots leaving me feeling drained and down. i was told that when i had finished having my children that they would remove the remaining one, and although i have finished as i only ever wanted the one i have not gone through with it yet.

I understand where you are coming from with people not caring or understanding, it took a long while to diagnose me aged 13 and i had so many scans. I had actually been sent to a child specialist as they thought i was making it all up for attention. I will never forget the relief i felt when they finally said what was wrong, weird but i was glad something was wrong and people would finally believe me. My parents have admitted since that even they had started to doubt me as time went on, not nice when you re 13 years old.

I know it is not what you want to here but the conclusion i have come to with regards to my condition is that i have to live with it. Yes i could have it out, but i am not ready to do that, it scares me to be honest.

Im sorry i cant offer you more advice, just wanted you to know you are not alone.

blue_monkey_2

Hi Lisaloo,

Thank you for posting, in a bizarre way it is so nice to hear I am not alone but not for you - if you know what I mean.

Do you take anything for yours at all? When I was st the hospital the sonographer told me it was due to ovulation and I have to stop that. One doctor offered me a hysterectomy at the age of 28 and before the kids, I said no, but that would not stop the problem anyway as it is the ovaries at the root of my problems and without those it means early menopause.

I have seriously spent the last few days considering this as I just feel I've had enough of either pain or drugs. I have taken an ovulation suppressing drug for most of my life and I just feel like I need a break. I forget one and I have a week of pain while I get back into the cycle again.

Thank you once again, it was just to be able to explain how I feel and have someone understand (I am sure it is the same for you as well) it really was most appreciated.

When I had my first ovary removed the sonographer put .6cms on my notes so they refused to operate, after 2 days I was in so much agony they gave me an exploritary op - that resulted in the ovary removal and 3 months recovery - 1 week before I was due to get married (which I still did!!) The doc who intially refused to operate as 'it was hardly causing me any pain' then told me it was 'the size of a small nectarine' when I asked how big it was. When I went for my follow up appointment the doctor told me that it was 9 centimetres wide and it was the biggest they had ever seen. Small nectarine!!

Lizard_Lady

I was diagnosed with PCOS in June this year and im 19 years old with a 2 year old.
I still have it in quite the early stages and have alot of the side effects of PCOS (ssooo embarressing!!) past 2 weeks ive been getting extremely painful shooting pains in my right ovary.
Am here if you need a chat xx

blue_monkey_2

Hi Lizard lady, thank you for your message. Yes, this is what I get too. What did they tell you to do for it?

For me it was stopping ovulation - although no-one told me this, I figured it out for myself after I had all of the scans. I take the pill that has 3 different levels of hormone at the moment as this stops ovulation. While I am not ovulating there is not a problem. The one I use is called Logynon. One thing to be aware of is that the 'combined' pill - that is one that is all the same colour for the pack - does not stop ovulation, it layers the cervix wall so an egg cannot be implated but you still ovulate. But I can certainly tell when the pill has stopped working for me.

There is another pill out that has just been licensed in Britain (but not in Scotland) called Yasmin, it is very expensive but I am going to ask if I can have this and see what the doc says at my appointment next Thursday. While it is a combined pill it stops ovulation - if I do not ovulate the egg is not released and thus the follicles do not grow into cysts which is where the problems come from.

I just wondered if anyone else suffering with PCOS has been given any other advice on what to do. I guess because I have been able to 'get rid' of my problems - I was very lucky with my last doctor as I used to tell her what I wanted and why and she would give it to me - I've not been 'diagnosed' though. However, when the pill stops working or when I come off it the pains start and cysts start growing. I guess I have one good week each month then it starts.

silvercar

I had a cyst removed years ago that had twisted on its stalk - very painful; apparently it was the size of a grapefruit! (Why are cysts always measured in fruit sizes??)

Have you thought of the mirena?

blue_monkey_2

HI SC, I had that, my ovary was too badly damaged so they removed it with the cyst. They told me that they 'left tissue because the ovary can csometimes grow back' so I still get pain from that side too. I'd rather it all have been taken away. I was then told there was a 1:200 chance it could come back. And it did. But still on the NHS there is no rush and a 6 week wait for an emergency scan appointment.

After I had the removal and I had more problems I saw a gynea doc private after having private scans who said he could get me onto his NHS list for an op if I needed it, he suggested mirena so I had it fitted but it only worked for a few months and I started ovulating again. I saw the same private doc NHS and within 2 weeks I was having a laporoscopy and he removed it at the same time. They said there was nothing further they could do.

The Logynon was the last thing left really, but the Yasmin pill is new and it is a combined pill but with no ovulation like the current combined pill. The only thing is that is is very expensive so it is mroe whether the PCT will allow me to have it. I shall see. I am not sure what other options I have left. The doctors do not seem to know what to suggest either, the only thing that suppresses it is to stop ovulating - I was offered a Hysterectomy but that would not have solved the problem because it is the ovaries that are the problem. That is what I do not get, how can the doctors not see it, none of them seem to have a clue.

Am I the only person wishing for the menopause so my ovaries shrivel up and stop working??

missingink

I can totally sypathise with all the stories posted here.

I've been in constant pain for a couple of years now, but always had painfull periods previous-nothing as bad in comparisson. Seems to have gotten worse since my gp decided to take me off of Cilest & put me on to POP(Noriday), but they say there's no connection.

I've had all of the syptoms listed here on a daily basis. Eventually refered for a sonogram(external & internal)which found cysts/fibrous changes. The sonographer decided to do watchfull waiting. Six weeks later, the scan reveiled the cysts had gone, but I was still in pain.

A few months later, my gp agreed to refer me to a gynaecologist. He thought I might have endometreosis & booked me in for a laparoscopy. I felt his diagnosis was wrong & the operation would be pointless...turns out I was right-nothing was found.

Now four months after the op I am no better off-still in pain, bloated, moody all the time(& getting worse!) & with ugly scars from the needless op. Due to make an appointment with the nurse in a couple of weeks for a repeat 'script for a pill I don't want to take but they refuse to try anything other than a POP as I suffer from migraines!