Could this be endometriosis?

Hi all and apologies in advance for a long post. I am feeling so sad and desparte right now, but really glad to ahve come across this site for some support. 

For the past year or so, I've needed to pee on a regular basis that seems more often that others. I thought maybe I have a small bladder or an infection. My GP just told me to 'hold for longer'. So recently I booked a private scan to see if anything was going on...

To my complete surprise, a large cyst was found!! It measures about 14 x10 cm. On the scan you could see it pressing on my bladder, which was full as I had to drink for the scan. She was not certain what type of cyst it is, but it is blood filled but no blood flow.

I was really shocked because I never have any pain, I do a lot of exercise, and eat healthily. I'm in my early 30s. My periods are regular and not painful, and I never have tummy pains before/during or after my period. I dont have bloating, and my tummy is flat so no external signs. 

I quickly went to my GP to ask for a referral to a specialist, and luckily we have a local specialist centre here (which I didn't realise until now).

I saw the specialist, who conduct a pelvic exam and confirmed there was indeed a 'mass' on the left ovary. He said that it was mobile, which is a good sign apparently. He ordered some blood tests to check for cancer/tumour, which was very scary to hear, and referred me to their specialist sonograpger for another US. He said at this point he is unsure what type of cyst it is, but will most likely need surgery due to its size (He was so kind and caring, and happy for me and my husband to ask lots of questions). A week later I had the ultra sound, internal and external. The sonographer confirmed the cyst, and also said my right ovary had signs of scarring and adhesion (which has upset me even more), and that possibly my womb lining is slightly thick. She said taken together, this looks like endometriosis, however I have no pain symptoms, and my CA125 level was at 36. She moved the internal US a lot asking if I felt any pain, but nothing! She said it is definitely not cancer. And that it looks like endo, but she cant tell for certain. She also said, if I want kids, I am now quite old (I am 33!) and should start as soon as I have had surgery. She has referred me back to my specialist for further discussions.

So overall, I am in a state of sadness and feel very upset, for now being told it may be endo, and that I should have had kids many years ago. I feel like I have done something wrong! My husband and I wanted to try for a baby soon, and so are completely shocked by this. I keep bursting into tears, and he hates to see me in such a state and just wants to support me. And I keep reflecting that I tried very hard to eat healthily, and maintain a good fitness level in preparation for future health and being a mother. Sorry, feeling pretty desperate and upset. I have been really sad lately because my mum has been suffering from a sudden severe illness and we thought she was not going to make it, but through a miracle she is now in recovery and i just wanted to focus on her. 

I will see my specialist again at the end of the month, and this will be to talk about having a laparoscopy to remove the cyst and reduce the scaring on the other ovary. I am so scared my ability to have kids will be reduced or non-existent. I didn't think 33 was that old, but now I feel ancient and helpless!! I also feel angry that my body has somehow let me know and I didn't do anything to make it better. And I feel angry I didn't try for a baby before, or at least find out my fertility level.

Thanks again for listening to my story. Does this sound like endometriosis, or is it an ovarian cyst on one ovary and scarring from a ruptured cysts in the other? I am guessing only surgery will provide an answer. 

7 Replies

  • Hi

    At the moment you are in shock and have too much to take in and so have gone into panic mode. This is totally normal but let's break it down into smaller pieces and finding positives within it.

    Regarding the cyst, there is ultimately no way of knowing until it has been removed but it has all the signs of being an endometrioma (ovarian endo) and is not cancer. So that has to be positive number 1. The only other kind of cyst would be a hemorrhagic cyst (a cyst associated with ovulation) and they would usually resolve. Also an experienced sonographer would know the difference. 

    The location is such that it has alerted you to its presence by pressing on your bladder before you are getting any endo pain. The pain of endo is not necessarily related to its extent but if there is any deep disease this would almost always cause some symptoms such as IBS, pain with sex, back pain, bowel problems etc. So in the absence of any such symptoms that has to be positive too. A healthy lifestyle is very important with endo so rather than having done anything wrong you have probably done something very right by eating healthily and keeping any endo at bay so that it can be effectively treated now rather than getting to a more severe stage. 

    You are being seen in an endo centre from the start so another huge big positive.

    The chances of pregnancy reduce naturally with age and decline most after age 35. So after your surgery you should have the perfect window for trying to conceive. The chances of success are greatly improved after a lap so I should say all things considered, if you do have endo, then this is probably a good scenario.

    I hope it all goes well. x

  • Hi Anna, I'm sorry you are going through this but you're not alone. It certainly sounds like endo. Not everyone gets pain, some women are completely symptom free while others are in agony every day. I'm glad to hear that you are at a specialist centre as it can make all the difference. With a good surgeon and excision of all endo there is no reason why you shouldn't go on to have children, but in the unlikely event you do have trouble conceiving there is help out there so don't be to discouraged. I know how hard it is when you first start on this journey and how emotional it is  but you will be surprised on how strong you are. If there is anything I can help with please don't hesitate to let me know. You can also pm me if you prefer , just click on my name and click message.  Take care.

  • Anna, cheer up :) I know how you feel because I was shocked when I discovered endo two years ago when I was 24 years old, the pain depends on the place of cyst that's why may be you have not any pain with this size, also you can be pregnant after lap a lot of people had endo turn pregnant normally or even with help, feel blessed that it was not Cancer, smile and cheer up, you deserve to feel happy ;) 

  • To everyone who has replied.....thank you!!!! I feel very grateful that you have taken the time. You are all right. I have to think of all the positives, and feel blessed to be around caring, knowledgeable and kind people! yep, it was a big shock but at least I am in the right place to seek the appropriate help. Thank you again. I will keep the thread updated once i have had my next appointment in case anyone experiencing something similar. Axxx

  • Good luck Hun and don't forget we're hear should you need us even if just to vent. Take care and look after yourself.

  • I'm sorry to hear that you're going through this. I totally agree with what other posters have said--you won't know for certain what the cyst is until it's removed, but it sounds likely to be endo related and not cancerous. Scarring and adhesions are also likely to be caused by endo.

    I can relate to feeling like you've done something wrong, but you really haven't. It sounds like you've been doing your best to take care of your health all along, and you couldn't have known or prevented this.

    I had a similar situation in which I discovered I had endo after a large cyst in my ovary ruptured.

  • Thanks again to everyone here. This forum is amazing, and has really helped my understanding of everything xxx

    My updates so far......I've got a laparoscopy booked for 25th May. My first every surgery! 

    I saw the consultant again. He said we need to take a 2 stage approach because of the endometrioma/cyst size (14cm). He said it is most likely an endometrioma, although there is slight chance it could be a 'mucous filled' cyst, but unlikely.

    So in lap 1 surgery, he will drain the cyst and attend to any adhesions, as it looks like my other ovary is stuck to my uterus.

    Then for 3 months I’ll have hormone injections (zoladex I think) so the cyst can shrink and not be agitated by having periods.

    And then another lap to remove the cyst. The consultant said this approach is the best one to try and minimise the chances of needing to remove the ovary, and protecting as much ovarian reserve as possible, However, he did warn me the ovary might already be damaged (which was difficult to hear).

    Honestly, I don’t know what to be more nervous of, the surgeries, the hormone injections and side effects, or the possibility that my chances of conceiving might be significantly reduced! So worried about all of it but aiming to stay positive and optimistic.

    Has anyone else followed this approach for a large cyst?

    Thanks again and I hope everyone is well! 

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