Please help/ endometrioma cyst

[SabZi]

Hi all, my recent scan has shown a benign cyst called an endometrioma. They have made a referral to gynaecology but I was told I have to wait a year to see the specialist. This is affecting my mental health as I think every time I'm getting my period the cyst is getting bigger. I ask my GP for some medicine but I was told there isn't any treatment for this. He gave me Rigevidon, but he said it's only for pain control and it's not a treatment for cyst. I read this cyst will affect the eggs because of the pressure on ovarian and you may loose your Fertility. I don't know what's best to do, should I start the pills and wait for the hospital appointment or that may be too late? I don't even know if that would be helpful to start the pills if that's not a treatment as the side effects of them are horrible. Would you please help me if you're in the same situation?

[Lindle]

Did the scan say anything else such as whether any of your organs were stuck?

[SabZi in reply to Lindle]

Hi, no it just says there is a 4 cm ovarian cyst on my left side.

[Audrey4]

Hi, I have an endometrioma as well, and I’m taking the pill Cerazette. It can have some side effects but same as you, I didn’t want the cyst to get bigger and Cerazette can stop your periods. Hope you feel better soon!

[SabZi in reply to Audrey4]

Hi, thanks for your message. I think that's a Progestogen-only pill, am I right? I was told I should do some blood tests and breast scan before starting them, have you had them? Do you know if this is sth I can ask my GP for?

[Audrey4 in reply to SabZi]

Yes it’s a progesterone-only pill. I didn’t do specific blood tests or breast scan, but I think you can definitely ask your GP and see what they say. I have also read that NAC supplements could help with endometriomas, but I haven’t tried them and don’t know if they work/have side effects. Take care

[SabZi in reply to Audrey4]

Fab, many thanks for your help xx

[ritschgi]

When I first got diagnosed with endometriomas, my GP was able to get me repeated ultrasounds before I was even referred to Gynaecology. Maybe you could do that, just to get an idea if/how fast it‘s growing? If it isn‘t growing you can have some piece of mind and if it‘s getting bigger they might move you up the priority list (I wasn‘t even being referred until my cyst was 8cm, at which point I saw a specialist within 2 weeks…)

[SabZi in reply to ritschgi]

Hi, this is so helpful, many thanks for your message.

[Donnaysha]

hey, fwiw I think many women on this forum are unfortunately quite familiar with endometriomas. I wouldn’t descend into panic quite yet, as there are so many factors that can affect your fertility.

I have an 8.5cm cyst on my left ovary stuck to my intenstines, and I suspected 4.3 cm cyst, blockage on my right side. From my research it is possible that the cyst could shrink under the right conditions, given it is less than 5 cm - although how true that is I don’t know.

From my experience and understanding one of the most common ways of trying to help endo and endo cysts is through hormonal therapies - specifically progesterone e.g. Mirena or The Pill. Ask about that and if you’re not opposed to taking them, then I would start, as I suspect the gynae will suggest something similar. They tend to be slow and reluctant to operate unless they suspect it to be more widespread or symptoms are preventing you from functioning.

Cruelest part of it is that stressing about it will probably make it worse. Although I know once you know that something is that it’s hard not to think about it all the time! Good luck and try to stay optimistic

[SabZi in reply to Donnaysha]

Good morning, this is so helpful, many thanks for your message. Hope you get better soon, as well.

[AR2008]

Hi, I hope this comment can give you some reassurance about your cyst. I also had a endometrioma cyst, but mine was 15cm by time it was removed. The first time I knew of its existence it was already 10cm and I waited 10 month to have it removed- so it grew 5 cm in that time essentially. I, like you, worried it was growing every time I had my period.

I haven’t been told anything specific about my fertility since it has been removed. But I was certainly ovulating from that side as I felt the pain. And my surgeon managed to saved my ovary on that side so I can only assume it is fine.

My advice is see if you can get yourself some pain medication- naproxen if the pain from the cyst is severe. Or try the pill (I never got offered it until after it was removed). Alternatively, you could enquire to your GP about going on a course of triptolerine. It complete stops your periods as it stops your oestrogen. I am on a course of it at the moment but was initially offered it while I waited for surgery.

Hope this is helpful! And hope you get your appt soon to see a specialist.

[SabZi in reply to AR2008]

Hi, this is so helpful, many thanks for taking the time to help me.

[E-ZEE]

If the cyst is less than 4cm,so do not worryfor now.Avoid junk food and dairy and force your gp to rescan after few months.Endo cyst contain blood not fluid be mindful.Also,consultant does not do any treatment as well if its small.So be patient change your eating habits and life style and go for rescan in few months time.Hope you will get rid of this evil soon.Good luck girlxx.Stress makes hormonal condition worst so do not think much about it .

[SabZi in reply to E-ZEE]

Hi, many thanks for your help and kind words xx

[Rainbow2468]

Hi i had one of those and it disappeared by itself. Sending you a big hug 🤗❤️

[SabZi in reply to Rainbow2468]

Hi, that's great, many thanks for your kind words xx

[ClaudiaGrace]

Hey SabZi,

I’m so sorry to hear you’re having to wait so long and that you’re worried about your cyst. They are not uncommon with our condition sadly but it is a worry when you find out you’ve got one. I have one that is also about 4cm and am on the wait list for surgery, although not sure if I will have it still, and my gp said she would scan every 6 months to keep an eye on it. In my most recent scan it had increased in size but they don’t always get bigger and can get smaller I believe. There are also medications that can shrink them for some people such as progestins but some of those will need to be diagnosed by a specialist. If you are really worried and can afford it I would go and have a discussion with a private endometriosis specialist consultant and get their advice on what to do for now.

I’m seeing my private consultant to discuss the increase in size (need to make the appointment still but likely next couple of weeks) and am happy to share what he says,

Best wishes,

Claudia

[SabZi in reply to ClaudiaGrace]

Hi Claudia, many thanks for your message. I would appreciate it if you could share your consultant’s advice. I had a quick look but found it too expensive. Hope you get better soon as well xx

[Cockapoo-2016]

Hello

Apologies this maybe a long reply.

Two years ago I had no idea what was happening to my body. I woke up fine had breakfast going by my day usual. All of a sudden I had a serve pain lower abdomen didn't think of anything just bad cramps, took pain killers and hot water bottle nothing worked the pain just got worse over time that I ended up curly myself in a ball in the bathroom I just couldn't get up and walk. My partner called an ambulance by they would not sent one due to covid, so my poor partner drove me to A and E I got seen by a A and E doctor they did all kind of test and scans. The scan resulted came back that I had a 8cm cyst pushing on my left ovary. The next day I had to go and see a gynecologist more tests and also had a blood test, the gynecologist didn't know what she was dealing with as my CA125 was too high. I was urgently booked in for surgery laparscorpy. When I had my laparscorpy surgery, the gynaecologist found the cyst had reputed 8cm. I was lucky that nothing else happened and also had another cyst on rectovaginal 6cm.

At the time, I was 44 years old when I got diagnosed and was told maybe diagnosed with the fact that I may struggle to convince. Last year, I had an AMH blood test. My egg counts are low due, to surgery, age or having endometriosis that the cyst was left too late. But don't let this discard you all women are different. I can't go on the 💊 to slow the growth as I have other health problems, so I went on a gluten free diet and no dairy diet alots of fruit and veg along with slamon which can keep endometriosis under control. I suggest that you ask to have frequent scans to see if the cyst growing or is staying the same push your GP, gynecologist or endometriosis specialist. I would go with endometriosis specialist as I think they have more knowledge about endometriosis then a gynecologist. Good luck 💓 to you xx.

[SabZi in reply to Cockapoo-2016]

Hi love, many thanks for your message. Sorry to hear you experienced that much pain. Hope you feel better now. I am on gluten free diet as I was diagnosed with celiac last year. Will try to add more omega 3 and reduce dairy. Take care xx

[MiniCeeCee]

Hi SabZi sorry to hear you’re story, but just wanted to let you know you’re not alone. I’m in a very similar situation - with a 3cm cyst found on my left ovary 2 months ago whilst I was going through a 2nd round of IVF with the NHS. My worry now is that it’s growing every month (especially as I have very light periods, it feels like the period is going backwards and just feeding the endometrioma instead). I’m trying to get my IVF clinic to refer me to an endo specialist, as my GP also said it could be up to a year wait. If they won’t refer me, like others say, I’m going to try and push for a scan in 2-3 months to see if it’s grown, worth us keeping an eye on them where we can. Are you going through IVF at all? Or trying to conceive naturally? X

[SabZi in reply to MiniCeeCee]

Hi, thanks for your message, sorry to hear you are also struggling 😢 I'm also getting light period recently, so it's feeding the cyst now 😪 IVF is so expensive if I want to go private, around £8000. I don't know how to convince NHS to refere me. I think I should wait for the specialist appointment for that as well.