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Endometriosis UK
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Endometrioma cyst

I've just been told I have 2 cysts one of them being an endometrioma cyst. Thus indicating that I have endometriosis. I am 36 years old and have had no symptoms therefore I am in shock at what I have been told. Especially since I've been trying to have a baby for over a year. We've had a miscarriage at the beginning but nothing since. Looking for someone who has experience anything similar.

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Hi darling. I'm in the same boat as you. I'm 35, no children yet, got told recently I probably have endo as I have 2 cysts (1 about 30mm in size and growing) and I'm going through the motions of diagnosis now. They're putting me on the pill for 6 months to see if the 2 cysts change because that, apparently, will mean that I do have it, without getting a laparoscopy. I just got told 2 weeks ago as well that I have a bicornuate uterus which makes things even more difficult. My boyfriend and I aren't trying for a baby yet as the relationship is just a little too new (not quite a year together yet), but with me on the pill I clearly won't be trying before next year anyway.

It's really stressed me out, this whole thing, but just know you're not alone.

Sending love,

Ella x

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Thanks Ella for replying. It's been a bit of a shock and really upsetting. Did you see a gynaecologist? Hoping they don't ask me to go back on pill as feel like my time is running out to have kids especially since we've been trying for over a year. I've been referred to a gynaecologist for them to decide what to do next but have no idea how long it going to have to wait for that. How long did you wait to get an appointment?

Jen xxx

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Hey Jen,

I know, my sweet. It is really very hard to get news like this. It feels like you work hard all your life to achieve something for yourself and then it seems like you should have been a bit more of a deadbeat and got pregnancy done early!!

I had a private abdominal scan in early May just as a general health check. The doctor told me I had 2 cysts and that I needed to see a gynaecologist. I then went to my GP in mid-May who referred me for an ultrasound and vaginal ultrasound which I got in July. He called me the next day and told me he thinks I have endometriosis and he would be referring me to a gynaecologist. I freaked out and I saw 2 other gynaecologists privately. The first of those was useless and said I don't have endo. The second said the bigger cyst was a "chocolate one" meaning it's solid and brown like chocolate and that I would need a laparoscopy. She also said the bigger cyst was definitely growing and had to be monitored and dealt with. My appointment with the gynae on the NHS was this Friday 18 August. The doctor there said that because I am not trying for a baby right now, they would like to put me on the pill for 6 months, ultrasound me again in 3 months' time, and if there is a change in the size of the cysts that means it's definitely endometriosis. I don't know what would happen if there was no change to the cysts but I will try not to speculate and freak out about this right now.

I know you are worried but I have read a lot of very reassuring articles which confirm that your age and having endo are not the end of the world. You will be able to have children but it will just take a bit of time. Try not to stress. I will try find you the articles, so you can put your mind at ease a bit.

It does take time to go through the process, unless you speed it up and go private but this is expensive in the UK, and not necessarily better than the NHS. I find that the doctors on the NHS take their time with you and are thorough. They don't rush you like private clinics can do. Anyway, I can tell you that from what I have researched and heard from all the gynaes I've seen is that at 36 you definitely have enough time to get your diagnosis, get treatment and try for a baby naturally afterwards. Please don't despair. You're not alone and you are not without chances. My friend has stage 4 endo (the worst kind) and just had her second baby at 36 with a completely natural (and very quick) conception. It's the anxiety that makes it all worse for us.

I will go look for the articles for you. They will help to put your mind at ease.

xxxx

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thedailybeast.com/the-crumb...

tommys.org/pregnancy-inform...

uk.clearblue.com/how-to-get...

Read these darling and see or yourself. Your chances of becoming pregnant are only slightly lower than the normal ones, even at 36. The main thing is you have a partner and the two of you can work together towards your baby. xx

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You have made me feel so much better about the whole thing thank you.

I was thinking of going private as I don't think I can stand the wait! From what I've read I think it's quite straightforward to get them removed but like you said it just takes time to get through all the stages before hand and if we weren't trying for a child then I definitely wouldn't be wanting the surgery.

I'm so glad I joined this forum, it's nice to know I'm not alone xxx

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Awww bless you. I felt exactly the same way a few days ago but I am definitely feeling more positive. My boyfriend even said after I told him about the endo that "we just have to have more sex then don't we?" Men! :)

But, it won't hurt to read and follow the tips about getting pregnant. Make sure you download the iPeriod app (if you don't have something similar already) and begin tracking your periods and ovulation. Make sure you have sex during your green week (ovulation) and apparently it helps if you elevate your pelvis after your man finishes for about 10mins. My friend (the one I mentioned) swears by this. It's really important to have sex at the right time, it appears.

But, if they put you on the pill, it will be only for either 3 or 6 months, so don't worry about that. They do that so they don't cut you unnecessarily. It's better that way, let them investigate everything else first and if they say you need the surgery, then you will have to have it and apparently afterwards it improves conception. And at least you can enjoy some worry-free sex for a while. You are definitely not too old, so put that out of your mind altogether. As a last resort, if everything else is too difficult at a later stage (which it won't be!!), they give IVF on the NHS till you're 41. So you have plenty of time to get your diagnosis, any treatment if necessary, and try for a natural conception, and still have the option of IVF. So, time is on your side.

But I would say don't bother with private right now. Go through the NHS, it's slow and steady but sometimes quicker than you expect. You will be alright. Keep me posted and if you get stressed out, send a message. I will be happy to share your worry because I am going through the same thing. As are many others on here, so you are not alone, and you are important xxxx

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Thank you ❤️

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Hi,

I understand how you feel. I am 34 and been ttc for over 3 years. Have been going to a fertility clinic since March 2016 and was told o had no problems other than not ovulating. Clomid didn't work. They referred us for ivf and had appt Tuesday just gone as we were supposed to be starting treatment. However new clinic have found I have pcos, deep pelvic endo and endometrioma so no ivf until I have had surgery. It would be wonderful to be able to conceive naturally. I know am not much help but just to say I get it and wish you luck on your journey x

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Thank you so much for you're message. It's such a stressful and heartbreaking thing to have to go through. I have my first appointment at fertility clinic in December (they can't see me any sooner) and after just finding this out and now waiting for a gynaecology appointment I'm going to have to see about maybe finding the money to go private to have surgery. As I have a feeling I will be the same as you and won't be able to go ahead with any treatment until I have surgery.

I hope you don't mind me asking but how long do you have to wait for your surgery? And have you done it through the NHS?

Thanks

Jen x

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No problem I don't know exactly but my appt with endo surgeon is sometime.in September and then hopefully within 6 months. They have put it through as urgent but I think it's cos it has been missed for a long time (despite me telling first clinic I was.in agony etc etc). I would imagine the gynae appt will be the one.you need more at the minute as it's better to find out if they need to operate before starting on the fertility journey. You could ring the gynae department if you havent already and ask about waiting lists I am always chasing things now haha. Hope you get somewhere soon x

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Yeah I think I will phone them this week. Thanks again for your advice and wish you all the best in your journey xxx

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No problem. Lots of luck to you too xx

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Hi Jen,

I'm 36 and just been diagnosed with endometriomas on both ovaries aswell. I'm also hoping to try for a baby asap, but the surgeon has made me quite worried about the actual removal of the cysts, saying I may not be able to keep the ovaries? Was there any mention of this in your consultation? I was just considering not having the surgery and trying to get pregnant anyway, maybe its not possible I dont know! Interested to hear any more info about the actual removal of the cyst and how it might affect or not your ovary.

Best wishes

Abby

x

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Hi Abby,

I am going for a laperoscopy next week to remove the cysts and the endometriosis they find. I had an MRI to confirm the endometriomas and my consultant said that they class it at stage 4 endo automatically if you have and endometrioma on each cyst. THey took blood test to check my ovarian reserve as they said if I had low reserve they wouldn't be keen to operate as we're trying for baby. Luckily it can back all okay and so surgery going ahead. He said nothing about removal of ovaries. One of cysts is about 2cm and the other 4cm.

The consultant said our best chance of falling pregnant would be for us to go on ivf waiting list as soon as I've had the surgery.

I hope this info is of some use to you. It's quite a difficult and stressful time so if you want for info please let me know xxx

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Hi Jen, thanks for your reply, interesting to hear its stage4 already, I guess thats what I have then. Also interesting to hear about blood test I will mention that at next appointment. I havent seen an endometriosis specialist yet, just an abdominal surgeon who was going to do the cyst removal but has now referred me as the MRI showed it more complicated. So thats good news you have the surgery now, and the cysts are small. From reading other stories it seems a great advantage to have the surgery if you can and if its straightforward. I need to see the endo surgeon to find out more about how the ovaries are affected, perhaps the abdominal surgeon who was unclear about ovary removal to me, was just talking about what can happen, rather than what they would actually do. Bit confusing as I'm in France dealing with this! Best of luck with it all and a speedy recovery xx

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Thank you and good luck to you. I hope you get the answers you are looking for from your doc xxx

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