Endometrial Cyst

[Dance365]

Hi. I have just been for a baseline scan, as I have suspected Endometriosis and have struggled to fall pregnant for nearly 4 years. The scan showed an Endometrial Cyst, which the sonographer said should not effect my fertility. If I have an Endo cyst, does that mean I have endometriosis and that is what is causing the pain with my bowel/bladder? She wasn’t able to answer that question as she said she can’t see those organs with a ultrasound. She just said that I should look at IVF and sooner rather than later. And perhaps avoid surgery/laparoscopy as this could cause more damage than good..... and the pain with my bladder etc I’ll just have to live with!!!! “The best way to ease symptoms for endo “apparently” is to get pregnant .... “ really not helpful!!!!!! Do I have Endo or not? Uhhh!!

[luthien]

Hello,

Wow sounds like you've been through quite a bit already. Some points about what you've been told, information out there and facts, which may help.

1) An endometrial cyst is a blood filled cyst in the lining of the uterus - endometrium, it may or may not affect fertility, it is difficult to say.

2) Ideally you need the cyst drained and the sac removed, this will stop it filling up and will prevent it coming back. That's not to say you won't ever have any more, you could, you could not, it's not easy to say.

3) Depending on your endometrial cysts location and size it could be pressing on other organs causing the pain you have, or you could have endometriosis on other organs.

4) To determine if you have Endometriosis and locations in your pelvis you need a diagnostic laparoscopy. This is the only method of formally diagnosing whether you have endometriosis. No scans will actually detect all the endometriosis; sometimes it shows on scans, most of the time it doesn't.

5) You don't need to consider pregnancy yet; this is an old fashioned view as stated in the article by the BBC. "Women in 20s told 'get pregnant' to ease endometriosis symptoms"

bbc.co.uk/news/uk-scotland-...

This can actually be harmful as endometriosis can cause organs to stick together, thus it may become more painful. Also all the symptoms may come straight back after. Pregnancy doesn't cure or treat endometriosis.

6) There are various treatment options including hormones and surgery, Both have different outcomes and each women needs to consider her own circumstances to make the choices.

Hormones - can slow the growth, may give the woman more time to live a normal reduced symptom life, may give the woman time to decide what to do next. It will not stop or reverse growth though

Surgery - this is really the only way to treat endo. There are three forms, think weeds; Ablation is like sanding with a high powered hose - it'll take off the greens but leave the roots. So endo can and will regrow

Laser / Diathermy / chemical - this is like weedkiller - it'll kill the greens and may kill the roots. So endo is still present and can regrow

Excision - think using a spade to remove the whole weed - there is no more weed present. This is considered the best method as it'll remove all visible endo, regrowth is less but can occur due to any cells being present,

7) Surgery doesn't make things worse. Yes there is scarring from the surgery itself and can cause small scars inside, but if endo is excised via a laparoscopy the comparison to have reduced pain and symptoms is so worth it just to have a more normal life, to only need some painkillers.

8) You don't know what's happening on your insides, and it's your body so you need answers! If that means a specialist needs to go inside and have a look around, take biopsies, then that's what you need to go through to know what's wrong. A good specialist will do a laparoscopy to diagnose endo, checking your uterus, fallopian tubes, ovaries, bladder, ureters and urethra, bowel and rectum. They will excise any they find, take biopsies and can check your tubes / ovaries for any possible fertility problems. After that you can always decide what you want to do based on what you then know.

Happy to answer any questions; just so you have an idea of what I've been through I posted my story and an update, feel free to have a read. It follows some of the thoughts you had.

healthunlocked.com/endometr...

healthunlocked.com/endometr...

Wow, that ended up being a long post!

It may all be scary and daunting at the moment but you're doing the right thing to question what you've been told. x

Remember you can ask to be referred for a second opinion.

[Dance365 in reply to luthien]

Thank you so much. Your reply has been very helpful. I hope that things are improving for you. Xx

[Bleeding-Soul]

From the comment it seems like you want to know if you have endometriosis so a diagnostic lap should be pushed for. However sometimes and it’s rare surgery can do damage to the ovary so they suggest trying to conceive naturally if the cyst is small. You didn’t mention the size of your cyst but regardless these cysts and endometriosis can affect fertility and it might be worth having it removed

[ClaireL2805]

Hello, I am recently going through a similar situation. In December after two years of trying to fall pregnant, I decided to go private and have a baseline scan. They found a 7cm endometrioma on my left ovary! I was in shock. The doctor told me to have a endometrioma, I do have endometriosis. However people have different levels and symptoms. Some people have cysts, some people have lesions, and some people have both.

My doctor advised me to have a MRI done which I did, it showed that I had little scarring, and in my case, my issue was more localised on my left ovary, and that was causing the issue.

He also advised that for the moment its best to leave the cyst unless its causing me great pain, as removing can cause further damage to the ovary. Especially as I was 37, they didn't want to risk further damage. And they also advised to go ahead with IVF.

Fast forward a few months, I have had a mild cycle of IVF. The follicles on my left ovary didn't really grow from the stims, but the right side made up for it. I am now 5 weeks pregnant and praying everything progresses as it should.

I chose to have IVF due to my age and the size of my endometrioma, but everyone's story is different. All depends on your personal circumstances.

I wish you the best in whatever decision you make