Hi, I am completely new to the endometriosis 'world'. I am 21 and have been suffering from intense and heavy periods since I can remember. The past year they have gotten worse. At first glance I don't have many symptoms of endo; irregular periods, random spotting, pain during/after sex. Nonetheless, an ultrasound has shown 2 cysts (endometriomas). One is 14cm and the other 9cm (although my gynaecologist has told me they are most likely bigger than they appear on the scan). Due to the size of them, a laparoscopy may not be possible and obviously, there is an increased risk of losing an ovary. I have them on both ovaries and my insides are apparently squashed because of them.
In terms of surgery - how have your past surgeries been and has there been a risk of losing ovaries for you?
In terms of fertility - did anyone or has anyone considered methods such as egg freezing?
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HMinnie4
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Hi, I'm so sorry to hear that you're going through this. I had a 12cm endometrioma removed in November and they managed to save the ovary so there is hope. It was done in 2 sugergies, the 1st one drained the cyst and the 2nd one removed it. My surgeon said this one to try and preserve the ovary. However not even 3 months later and I have managed to grow another one on the other ovary this time! If I had my time again and was your age, I'd definitely look into freezing my eggs as I'm now worried at 32, it might not happen for me. Good luck with everything.
Hey thanks so much for replying and easing my worries a little. My consultant wants me to have an injection to stop ovulation for a while (6/7 months) after my surgery to allow my insides to dry out and heal. I hope this makes it less likely for the endometriosis to return. So sorry to hear that you’re still struggling and I hope any treatment you have had better and longer lasting effects. Thanks so much for your advice on fertility and freezing eggs. It’s crazy to even think about something like having kids at this age - My head is scrambled.
I definitely agree at your age youre not really thinking about having a family yet. And I think that's why I didint ever look into it, just guess you just assume having a baby is something you'll be to do as a woman! But once we started trying when u was 29, I've had cyst after cyst so I'd definitely think about your eggs whilst you're still so young. I also had an injection to stop ovulation for about 8 months. They gave me HRT as I was feeling really down and crying all the time with the injections. But they gave me acne.... I mean it might not happen with everyone but just a little warning.
Hi - has anyone suggested a two step approach to you? That way they drain the cysts in one surgery, then remove them in the second a few months later. This gives you time to do things like egg freezing in the middle if you like, and also minimises the risk of ovary loss overall. Unfortunately with endo we are not eligible for government funding for egg freezing, but there are places you can do a cycle for about £3k and get a loan if need be. If you can, I would also suggest getting referred to an endometriosis clinic - you would be eligible due to the severity of the endo.
Always remember this is your body, and you have options.
You must now be referred to a specialist endo centre with cysts of that size. That is ovarian endo (endometriomas) and it is usually an indication that there will be deep endo elsewhere. It is so important that your first surgery is done by the advanced surgeons in a centre. Also the injections your surgeon has suggested shouldn't be given under the age of 23 as they affect your bones and evidence indicates that they do not improve the outcome of surgery. Please feel free to message for more information as to where to go from here. x
Hi thank you so much for your message, you pushed me to look for another consultant for a second opinion and I am so grateful that I have. I hope I am able to raise these issues and all my other concerns to get the answers I need. He is an endometriosis specialist and has his own clinic so I am glad I got your message to look for an advanced surgeon!
Hi there, I am so sorry you are having to go through this and I know how incredibly overwhelming and isolating this can all feel. I am 24 with a 6cm+ endometrioma and I have just finished a cycle of egg freezing.
Make sure that you talk with your consultant about the fact that you are considering egg freezing prior to cyst removal and that they actually listen and advise. My first consultant told me “you are young and still have one good ovary so there is no need”. I am grateful that I didn’t listen as I now have a great consultant who is doing both my egg freezing (privately) and surgery (nhs). Spend some time researching the nhs endometriosis specialists in your area and try to find one that has a private practice where they also do fertility treatment -unfortunately the nhs will not fund egg freezing for endo. It may be worth forking out the initial consultation fee if you are able to, so that you can have 30 mins or so to discuss things with them in detail. They may ask you to pay for some scans/blood tests so that they can check if you are able to undergo egg freezing before cyst removal or if it is safer to wait until after. Also, before jumping into any fertility treatment, ensure you know the risks, understand the physical and emotional difficulties it can entail, and the full price for the complete treatment.
Please feel free to message me at any time if you have any questions I might be able to answer, or even if you just need someone to talk to. Dealing with all of this can feel really lonely, especially talking about fertility at a young age, but this community is an amazing help!
I am sorry that I can’t offer any helpful advice on the removal of the endometriomas themselves, but having an Endo specialist that listens to your concerns around fertility is the most important thing. Ensure you feel confident knowing that you have discussed all of your options and have picked the route that’s best for you.
Sending thoughts of comfort your way - take your time and get all of the answers you need and deserve. X
Honestly, at first, all the information was a bit surreal and I almost couldn't apply my diagnosis to myself. I know that sounds a little crazy but It didn't 'hit me' I guess until yesterday when I had my face to face consultation. She said if she didn't know any better she would have thought I was 5/6 months pregnant. I am a size 8 UK and I just thought I was putting on belly fat but obviously, now I know otherwise. I guess I just ignored it for so long because my mum would always tell me I just had periods as bad as hers were and bla bla bla. Definitely shut her up since the diagnosis but now my brain and all the worries in my head wont shut up! Hope you're coping okay
I'm sorry to hear this. It takes time to get to terms with it and even then it's hard sometimes. I totally understand how you feel and I was the same size too! The bloating was so strange to understand at first and yeah, the heavy periods that people just say is normal. It really is not. There's no rush to accept it in a set amount of time. Just take your time. Research and even talk things through with your Gyno. I'm always open to questions too. x
Hi everyone, thanks so so much for the overwhelming support and advice. Its been a difficult time since I am also studying my LPC LLM full time (qualifying solicitors exams and masters degree). In regard to my consultant, I am grateful to have private healthcare and since my GP was only offering the pill whenever I discussed my painful periods, I decided to get checked privately. That is when I had the ultrasound (Dec 29th 2020) and was told that there was a 13cm cyst and I had endometriosis. The radiologist that did the ultrasound (both ultrasound and transvaginal scan) told me my gyno would get back to me to discuss results. I got a phone call a few days later to discuss the results which were that I actually have 2 cysts (14cm and 9cm) on each ovary and my insides were squashed.
I had a face to face consultation with my gyno yesterday and she discussed a bunch of things with me including the risk of damage to ovaries and potentially removal.
In terms of fertility, I am willing to take any steps to give myself a better chance in the future. I am just so unsure of the steps themselves since I never thought to look into it. I will definitely take on the advice to do more research and hopefully, that will clarify things.
In regard to my consultant, I am happy with her, however, when I initially decided to choose her as my consultant I was unaware of the endometriosis. After your advice, I looked up the endometriosis specialist in my area and I have just booked in a phone consultation with him on Friday 12th Feb to get a second opinion. He has also opened up his own endometriosis clinic so I am hopeful that he will be able to answer any questions I might have as to how to proceed.
I will be sure to discuss the two-step approach and mention fertility concerns prior to the surgery. Thank you all for your kindness and advice.
I am so overwhelmed with all the information and hearing about other peoples journeys almost gives me a little bit of comfort. I am yet to find someone in a situation as unlucky as mine so I do feel a bit concerned with the severity of my endometriosis but I am trying to stay positive and help myself as best as I can.
Hi. I was diagnosed by Ultrasound and I had cysts on my ovaries. They say my next lap they might sadly damage them. Unintentional of course. But I am looking into alternative options for children also. It's something I've really had to look into more. Especially given they feel there might be an issue with my womb. I'm due a scan for that in two weeks.
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