Newly diagnosed endo. Cysts on both ovari... - Endometriosis UK

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Newly diagnosed endo. Cysts on both ovaries. Worried.

HJbell4 profile image
5 Replies

Hello, I'm totally new to this. I'm 21 years old and have just found out that I have cysts on both my ovaries (not sure of the size). After about 6 months of painful periods, i experinced bad abdominal above my belly button and unbelievable pain lower down. At first I thought it was just period pain with higher up tummy ache. Then I started getting pain in my bottom a few months ago and decided to see the doctor. I had a ultrasound on Monday and found out Tuesday about the cysts. I'm absolutely devastated and really worried. I don't know much as the more I read the more I worry. Still waiting for my referral to know more but I'm just wondering if anyone else has had cysts on both ovaries? My biggest worry is not being able to have children as that is what I want more than anything. I would be so greatful for some advice and support.

Thanks ladies x

5 Replies
Chaosa profile image

Hey there, I'm not an expert by any means and I hope someone with more experience will reply to you. I only have a cyst on one ovary and am waiting for my appointment with the specialist too. Having cysts on your ovaries (even both) does not mean you are infertile or incapable of pregnancy, they will possibly need treatment, but there are options available that maintain your fertility. Don't stress yourself out.

Linds123 profile image

They will need to do a laparoscopy before they can tell you much more, the scans don't show them everything. Having cysts in both does not mean you won't be able to have children so don't panic x

CharlieBoe02 profile image

Hi, there are different types of cysts, some more damaging than others. I've suffered for years with cysts and it was only on one occasion when I was 22 (I'm 31 now) when I had a dermoid cyst which then twisted and basically killed the ovary, that when I had the cyst removed I had the ovary removed too. I was told that even with just the one ovary left your chances of becoming pregnant are exactly the same as with two. I've continued to have cysts but my remaining ovary is still going strong. It is a horrid worry, but I hope that you find some comfort from my experience x

LMG76 profile image

Hi 2 weeks ago I found out I have a cysts on one ovary and a tumour on the other. They believe the tumour to be benign. My cysts is indicative of endometriosis. I went to the doctor because although my periods are fine and I have no other symptoms ( thank god), I was sporadically getting a very strange pain above my belly button during the night during my period. The pain was severe cramping for an hour or so, I'd take some pain killers and fall back to sleep. I just thought the area of the pain was odd. My lower period pains are minimal. Anyway when I found out what was wrong with me I freaked out and have just had the worst week of my life ever. I haven't been able to sleep eat or work. On Thursday I went to see a specialist privately who was recommended to me. He had totally put my mind at ease. I am having key hole surgery a week today to remove the tumour and cysts. He is confident he can save my ovaries and said that he will only perform a hysterectomy if he finds cancer. He said that I do not present as someone with ovarian cancer ( symptoms and age) but cannot say definitely. I am having the CA125 blood test at the GPs on Monday to detect it. Naturally I am very nervous about that. My consultant was amazing. And I have not really cried since. His advice regarding the Internet was that whilst it is full of information, often that information is not provided within appropriate context and so people are misinformed and get scared. He also told me not to spend too much time on forums because again they can be very scary and no one has the same experience of endometriosis. People with good experiences might not necessarily write on here because they have moved on, if you know what I mean. My advice is get to see a consultant ASAP, write some questions down and let them give you the information. Try to stay off the Internet! Btw the consultant thinks that pain I get high up is not related and actually due to stress! He is a world rebound expert in endometriosis and female cancers! My initial biggest worry was not having children ( I'm 37 and was planing to TTC this September). Now it's being well and not having cancer. I have asked that if I don't have cancer that he save my ovaries as best he can and he responded like it was a piece of cake. Seriously, trust the experts. I know exactly how you feel and I wish you so much luck.

HJbell4 profile image

Thank you so much for your replies, it helps to know I'm not the only one and that there is hope. I'm trying to stay positive and not do too much browsing of the internet (as I do usually feel upset after) . Desperately want to have the cysts out as soon as I can as they're causing a lot of pain and I'm worried about blocked tubes and advanced endo.

Good luck ladies, I wish you all the very best x

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