It's only been one month since my lap

[carolineeballard]

I had my lap 4 weels ago to remove 3 large chocolate cysts on my left ovary, and at the same time they diagnosed me with endometriosis. I was healing great, and didn't have much pain after the first 2 weeks. But yesterday the pain returned and I couldn't keep food down, I went to A&E where they did an internal ultrasound. And they found that I have another chocolate cyst on my left ovary, it is 7.6 cm in diameter.

I haven't spoken to a doctor yet about what the treatment will be. Is there anything other than surgery? The person who did the scan said it may just disappear. This doesn't seem believable to me, does anyone have any advise or have any of you been through something similiar?

My appointment to see the doctor will be next week, and I'm scared she will be booking me in for another operation.

[confusedandworried]

Hi, I'm sorry to hear this.

Are you in the UK? If so was your surgery undertaken by a general gynaecologist or a BSGE accredited endo specialist?

It is possible the surgeon did not adequately drain and carefully excise the cysts. Without doing so cysts can fill back up, continuing to grow.

As for endometriomas (aka chocolate cysts) somehow magically disappearing without consequence I'm afraid that's not true.

Endometriomas can rupture and I don't want to alarm you but I'm sorry to say they can be extremely painful when they do. Unfortunately when they rupture they spread more of the endo around (given the fluid is endo) and also as the fluid is sticky it can cause organs to stick together. I had relatively small cysts (each were less then 3cm) that ruptured on one of my ovaries one week before my scheduled excision surgery for endo (& on Fri 13th of all days) which resulted in my ovary being stuck to my bowel.

Endometriomas can signfy that the endo is more advanced making it even more important that you are seen by an endo specialist who is skilled in excision (ie cutting the endo out) surgery and not just a general gynaecologist.

General gynaecologists are more likely to burn off the endo which is less effective particularly with more advanced endo as really all this does is burn off the top. It doesn't remove it from the root meaning much like a weed it tends to grow back.

In addition general gynaecologists tend to only deal with the reproductive organs as this is where their interests lie meaning endo in other places is missed and symptoms are more likely to continue.

BSGE accredited endo centres were set up nationwide to deal with endo and all its complexities and if you are in the UK you have a right under NHS choices to request a referral from your GP to one of these centres. It doesn't have to be your nearest one for reference. You can find a list of accredited centres at the following website: bsge.org.uk

If you live in another country it will pay to ask around / research endo specialists skilled in laparoscopic excision surgery as this is considered the gold standard in the treatment of endo.

I hope this helps and wish you the best of luck, Jo

[carolineeballard in reply to confusedandworried]

Thank you so much for taking the time to reply.

Yes I am in the UK, but it wasn't done by a BSGE specialist. Is it still under the NHS? Is it possible for them to deny referring me? And what do I do / say if they do?

I didn't think they just went away on their own. And I don't understand why my doctors keep telling me that.

Did you know when yours ruptured? Can you feel it? My previous cysts were the size of a melon and the other two were the size of oranges. And what a day to have surgery! Can I ask, do or have your cysts developed again after being removed?

I don't think things have been properly explained to me. I wasn't even told what stage my endo is. And it makes me very sad to think if things were done properly in the first place then I may not have developed another cyst quite so soon.

Thank you for all the information, it really has prepared me for my appointment with my doctor next week.

[confusedandworried in reply to carolineeballard]

Yes, BSGE accredited endo centres are NHS, some are private and NHS, most are NHS and I know of one on the list that is private only (Elland Spire / the Harley Clinic one).

Your GP can refuse but particularly given you have a diagnosis they are not supposed to and you could make an official complaint if they refuse you the referral.

Unfortunately your GP may not even be aware of these centres. Mine wasn't until relatively recently when I printed off the list and gave it to her! Why some GP's don't know about this still puzzles (and infuriates) me given endo is one of THE most common gynaecological conditions effecting women - I suspect there would be more awareness if it were a condition affecting men 😒!

If you live in Wales or Scotland I understand the process is different but I am not particularly well read on their systems I'm afraid. That being said both Scotland and Wales do have BSGE accredited endo centres so referral should still be possible if you live in these areas.

It is worth checking that it is definitely an Endometrioma and not another type of cyst. There are indeed some cysts that will just go away on their own with no real issues.

However if it is an endemetrioma then sadly yes you will more than likely feel it if it ruptures. I haven't had children but I know of other women who have said the pain is worse than that experienced giving birth.

For me it was intense waves of pain and cramps that only subsided for about a minute at time, just about enough time for me to catch my breathe before the next one came. This went on for 3 hours during which time I was doubled over in tears. Afterwards I was left with a constant pressure on bowels and, sorry if tmi, flat stools which was as a result of my ovary getting stuck to my bowel when the cysts ruptured.

For some it can be very serious and urgent medical care may be necessary. In fact my surgeon who undertook a investigatory laparoscopy 2 months before my actual surgery (just to see the extent of work he would have to do) told me that had the cysts been any bigger he would have removed them during the 1st op due to the fact they can cause more damage and can be serious.

My surgery was about 3.5 months ago now and the remaining cysts were removed along with endo from pretty much everywhere except my bowels fortunately and I also had a total hysterectomy (ie uterus and cervix) removed as I also had Adenomyosis as well and sadly hysterectomy is the only definitive cure for Adenomyosis at this point in time. My surgery took almost 7 hours by a skilled endo surgeon. To the best of my knowledge I am endo and cyst free.

Unfortunately removing cysts from the ovaries is quite complex as the surgeon needs to remove as much of the endo as possible without removing too much of the healthy tissue of the ovary. Remove too much and there's the risk to the ovary functioning. Don't remove enough and there's a risk the cyst will regrow. It's a fine line and this is why it's best to be undertaken by a skilled endo surgeon.

Sadly you're not the only woman (and won't be the last) to feel let down by medical professionals who have limited and/or antiquated knowledge of this disease. All to often women need to educate themselves on this horrid disease.

I've heard most of the myths regurgitated to me during my 20 year span of endo, from "pregnancy cures endo" to "hysterectomy cures endo". These myths then get perpetuated amongst women themselves as they understandably trust the medical professional who has told them this.

It's important to learn as much about endo as you can in order to make informed decisions about your future treatment.

I hope this helps.

Best wishes, Jo