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  • "jasminespoerer" started this thread
  • United Kingdom

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Reg: Apr 16th 2011

Location: London

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Saturday, April 16th 2011, 5:52pm

Endometrial cysts....anyone have any experience?

Hi Everyone, this is my first post and would love to know if anyone has any experience with the problem I'm having?

I'm 26 years old, have been trying to get pregnant for around 3.5 years now. I've previously been told that the reason I haven't be able to get pregnant is because I was overweight (BMI was 39). I've managed to lose a fairly decent amount of weight now so the doctor finally sent me for a hycosy a couple of weeks ago. They did an internal ultrasound first to check condition of womb and said that was fine but when she tried to find my ovaries on scan they were completely covered by a giant 10cm cyst. They couldn't do the hycosy as the cyst was so large it would have been impossible to see anything anyway. Sonographer said that it was probably a dermoid cyst and would need to have it surgically removed. Also had a blood test to check for cancer (scary!!)

Went back for another scan with a more advanced sonographer who did an internal and external ultrasound and discovered there were in fact 3 cysts, 1 x 10cm, 1 x 5cm, 1 x 4cm the larger of the two being on the same ovary. She also said that my CA25 levels were slightly raised and said the reason for this was probably because the cysts were not dermoid but endometrial and that I would need a laproscopy to remove them. I also had an AMH blood test which has come back today showing I have low fertility levels.

I'm going to go to a private gynaecologist to get a second opinion as I'm feeling very upset with the NHS at the moment. Feel this should have been identified at a much earlier date - really when I was a teenager suffering agonising period pains. Just wondered if anyone has had similar experience and if anyone had any advice?


TTC 7 years
Me: 28, endometriosis and hydrosalphinx
DH: 30, All's well

2011: Laparotomy to remove endo cysts
2012: 2 x IVF :BFN: :BFN:
2014: IVF number 3 in Cairo, :pray:

Maria72

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Saturday, April 16th 2011, 7:22pm

Hi Jasmine and welcome to :FZ:
I've had the same problem as you when I was 25. I was in pain and used to pass out when my period was due. I got told I had wind!They wouldn't even scan me in those days! Then I went for a private scan in Italy and they found a 11 cm endometrioma, which I had removed there through a laparoscopy as here they wanted to take tube and ovary out...
It's always good to have a second opinion. Laparoscopy is a good way of getting rid of endo and endo cysts.
Endometriosis affects the amh levels, it makes them lower.
I would say have your second opinion, then have a lap & dye to remove the cysts and check the tubes. Then you can start fertility tx if you need to. You can take medication to keep the endo in check.
Good luck!
babydust

li li x

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Saturday, April 16th 2011, 11:14pm

Hi
I also am suffering from this! I have had painful cycles right from the age of fourteen! A year and half ago I had a lap done to check for endo which they said they would remove if there was any! Turns out I did have endo he said not bad enough to remove! I was then given clomid to try and conceive which I didn't! Was recently scanned and they found it had got much worse and there is now two cysts on my left ovary not happy! The pain from them is immense! So now they have put me on three months of zoladex injections before my icsi treatment!

Maria72

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Sunday, April 17th 2011, 6:41am

Don't panic as endometriosis cysts, also called endometrioma, have been found not to affect IVF tx or ovarian stimulation. Also the drug they use dor the down regulation part of IVF/ICSI is 'good' for enometriosis.
Good luck girls! babydust

  • "jasminespoerer" started this thread
  • United Kingdom

Posts: 79

Reg: Apr 16th 2011

Location: London

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Sunday, April 17th 2011, 11:40am

thanks for response, i find it amazing that these cysts go unnoticed so easily. if i wasn't trying to get pregnant i guess i never would have found out! weird.

i'm really keen to avoid IVF if i can, or at least try everything else first, i hear it's not a particularly pleasant experience, and seeing as the NHS only pay for 3 attempts and I want 4 children....!!


TTC 7 years
Me: 28, endometriosis and hydrosalphinx
DH: 30, All's well

2011: Laparotomy to remove endo cysts
2012: 2 x IVF :BFN: :BFN:
2014: IVF number 3 in Cairo, :pray:

li li x

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Posts: 58

Reg: Mar 31st 2011

Location: worcs

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Sunday, April 17th 2011, 10:44pm

Hi yeah I know what you mean I don't think I would of known if I wasn't trying to conceive! Good luck to you trying and hope it all goes well for you! I have to go down the icsi route as we have male factor too!

Hazy

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Reg: Sep 16th 2009

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Tuesday, April 19th 2011, 1:24pm

Hi Jasmine,
I had to have an endometrioma removed in 2009 - followed by a second lap to remove stage IV endo which was all over the place.
It helped me a lot - felt much more human afterward! Periods went a bit funny for a couple of months but then settled.
They told me that my best chances of getting pregnant were in the 12 months after the op. (but we didn't know about our male factor issues at that stage!)

I did get pregnant via IVF in the end and it wasn't as bad physically as I expected. Try not to worry about it - endometriomas are really quite common and the docs deal with them all the time. (apparently when my brother was born my mum had a whopper...which they didn't tell her about until someone mentioned it in passing years later!)

Hope it all gets sorted for you soon.
TTC for two years before referral
Lap 1: Sept 09 Found 6cm endometrioma and Stage IV endometriosis
Lap 2: Nov 09 Removed endo, adhesions, cysts and appendix (stuck to cyst!)
ICSI Dec 2010....BFP xfingers (hospitalised with sepsis at 6 weeks)

jenn11

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Reg: Jul 22nd 2011

Location: carlisle

Children: i have three children 1 is my daughter and i have a step son and step daughter 3, 6, 9

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Monday, September 5th 2011, 10:17am

I know this is a bit late in replying. I had been diagnosed with endo for 5 years when my periods completely stopped they told me to just keep doing pregnancy tests after being told the children would never happen for me, one day whilst i was at work i collapsed and got rushed to hospital they scanned me and found a small endometrioma they just ignored it and sent me off. few weeks later i went back to the dr because the pain was getting worse, he sent me back to hospital they did yet another preg test and was neg so they decided to take blood tests thats when they realised i was actually preg they sent me home and i had to go back 24 hours laters to just check my bloods so they could be sure ( you would think in the 21st century they would be able to tell if someone was preg) granted me peeing on stick didnt work hehe. any way because the baby hadnt been spotted on the last scan they thought it was eptopic so i had another scan the cyst trippled in size but they found out the baby was ok so when i was 12 weeks i had to have the cyst removed i was so scared. luckily everything was fine and it all went well then 2 days later i got a phone call saying i had come straight back to hospital immediately as they found that cyst was actually feeding my baby the vital hormones etc and if i didnt get teh treatment i need then i would lose her. luckily there is a very nice happy ending and i went full term with my miracle child. so dont give up hope everyone, :) i cant have any more children now as teh cyst totally destroyed everything and the endo doesnt seem to be controllable. but i have always said dont give up hope i thought it would never happen and it did just got to have a bit of faith. xxxx

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