😭😭😭 two cysts one on each ovary 😭😭😭😭 - Endometriosis UK

Endometriosis UK

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😭😭😭 two cysts one on each ovary 😭😭😭😭

Gemx85x profile image
Gemx85x
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Well I thought it couldn't get any worse this month esp with the way I'm feeling and ESA messing up. Plus being in serious pain I've not got 2 cysts one on the right which is 2cm and one on the left which is 3cm and that's the side that's in agony ( but apperantly it's not big enough to cause pain ) when they scanned me my left ovary was mixed in with my bowel so I had to massage it out so they could scan it and they picked up bits of endo around it too, I am just totally fed up now of it all. I'm just not sure how much I can take and is it really worth the pain and suffering to keep ovaries and womb for me not to be able to have kids anyway I wish I knew what was going to happen so I could make a decision?

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Gemx85x
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carolineeballard profile image
carolineeballard

Sorry you're having a hard time, i know how you feel. I had a 15 cm cyst, and i had to wait weeks and weeks for an operation date to come through but in the mean time I went to A&E and they did an emergency op. They did save my ovary, so don't be scared about losing yours, take one step at a time.

I read online that they only take them out after they pass 4cm. And I think it is awful that they told you that you weren't in pain because of the cysts. you're the only one that knows what your pain is like.

I have another 7cm cyst (they didn't remove a 2cm cyst when they had in on the operating table) but can't have another op so soon. I'm fed up with the NHS and with my current hospital.

Have you been referred to an endometriosis accredited hospital? They might be able to help or at least manage your pain better. I'm waiting to be referred to one.

Honestly think you need to keep pestering your doctors, that's what I did. I was literally seeing my GP and going to A&E every other day.

Hope you get this sorted. x

Gemx85x profile image
Gemx85x in reply to carolineeballard

15cm and 7cm wow there big, I wouldn't of left a&he if they where that big, no they won't operate there 4cm or smaller as my very 1st cyst was 4cm and they wouldn't touch it plus I was only 15. I've had cysts in the past that have caused no pain till the burst so I know some don't cause pain. And don't worry I'm not listening to them when they say it can't cause pain if there that small, coz of my history. Me saying about loosing my ovaries because I think it's time I had hysterectomy as I'm tired of fighting now 15yrs is along time x

Brownlow profile image
Brownlow

Hi Gem,

Cysts on ovaries can definitely cause pain no matter what the size. Remember, the people doing your ultrasound do not have endo or endo pain so they shouldn't be making statements like that. Endo cysts are called endometrioma.

How did you come to the conclusion that you need your ovaries and womb out (oopherectomy and hysterectomy) in order to stop your pain and suffering? Did a doctor tell you this? Reading between the lines is seems to me that you are not seeing the right specialist or diagnostic team. When you say "mixed in with my bowel" do you mean stuck to it? This is highly likely given the pain you are suffering.

An oopherectomy and or hysterectomy are not necessary to treat endo surgically. Some women do have this treatment and many experience a return of endo so it is not a guarunteed solution. There are specialist endo centres and you need to get referred to one of these. Endo is a comlex disease which is why it has a specialism all of its own and an endo specialist is the most appropriate specialist for you to see. They are not all wonderful but usually better than a misguided gynae...of which there are too many. Many GPs and gynaes are not aware of the existence of endo specialists. Choose one here bsge.org.uk/ec-BSGE-accredi... (on the NHS you have the right to choose) and go to your GP to get them to refer you.

For more information on how to do this see this excellent post by Lindle

healthunlocked.com/endometr...... Please look at her other posts on her profile for more info on endo.

Also do a search at the top right of this page for 'bsge' and many more posts on this will appear.

I recently had surgery by an endo specialist to remove endometrioma on each ovary, separate bowel from cervix, removal of all endo adhesions and also fibroids. I'm fine now and still have my ovaries and uterus. This is the type of op you need.

Gemx85x profile image
Gemx85x in reply to Brownlow

I'm under a endo specislist already and we worked out it should hopefully reduce some of the pain am in if they do the surgery but they waiting till I have children first but I don't think I can have kids and I'd rather be out of pain coz for the last 15yrs+ I've had no life and it's causing severe depression too. I am now waiting for a appoint to see him again as the Drs I seen yest where just normal gynae Drs. So I know they don't have a clue xx

Brownlow profile image
Brownlow in reply to Gemx85x

Did the endo specialist tell you that you need oopherectomy and hysterectomy? An endo specialist recommended this to me but I didn't agree and found a second opinion and I'm glad I did. I don't want children. I just didn't want to be put into menopause and having bits of my anatomy removed felt a bit mad especially as it's no guarantee the endo will not return and there are other longer term risks. There is a case for removing the uterus if adenomyosis is present and causing trouble but I didn't have that.

I wrote on another thread today about concieving with endo. It's just my personal view but it seems mad to try to get pregnant when so ill with endo and having cysts and adhesions. Being pregnant can keep it at bay but it often returns after giving birth and then one is ill with endo pain while trying to care for an infant.

Only you can weigh things up and decide what to do next. Ask your endo specialist if he/she will just remove endo and retain your uterus and ovaries. If you do elect to have a hysterectomy, try to keep at least one ovary. I would also recommend a second opinion either via your GP referring you for one or paying privately for a consultation.

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