Feeling desperate : There’s no other way to... - Endometriosis UK

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Feeling desperate

Bluetop1981
Bluetop1981

There’s no other way to describe it really.

I have just found out that my endometrioma on my right ovary has a partner, possibly a Siamese twin. At a follow up ultrasound scan (for Dec’s bout of OHSS) at my local hospital I was told that my right ovary has one 5cm and one 4cm endometrioma - and these may actually just be one big fat 9cm endometrioma but she wasn’t 100% sure. My right ovary has more follicles than my left but it’s also covered in endometriosis. My left ovary has 3 small endometriomas on it. I don’t know what to do. My first IVF cycle failed and despite 8/9 eggs fertilising, they were all average embryos with none good enough to freeze. My fertility dr puts this down to Endo. With this additional endometrioma I feel my eggs stand even less of a chance and access to follicles will be even more difficult!

I am trying all the supplements in the world to improve my quality, my dr has changed my treatment protocol, and on top of that I’m actually searching for another clinic as my dr’s attitude is getting to me. I can’t have a lap as I had a laporotomy about a decade ago so endo aside, I have plenty of scar tissue that nobody wants to interrupt. I don’t know what else I can do. Has anyone else been in a similar situation?

18 Replies
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Hi, have you tried taking seerapaptase? There are some posts on here about it, its eats away scar tissue and cysts. Its an enzyme so nothing nasty. I just started it the other day as i have endo and sluggish tubes. If you havent tried it already look it up online and see what you think x

Thanks for replying :)

I haven’t heard of this and can’t find anything on google - is the spelling right, or does it go by another name? Thanks

I mispelled, its serrapaptase 👍

serrapeptase

Found it now, thanks!

No problem x

Serrapaptase has no affect on endometriomas chocolate cysts

Bluetop1981
Bluetop1981
in reply to Bdgjdjd

Hi

Do you have more on this? Most of the reading I’ve done is ppl trying to open their tubes and not much on actual endometriomas.

Bdgjdjd
Bdgjdjd
in reply to Bluetop1981

Yes some women got benefits from it for opening the tubes but serrapeptase will not affect the chocolate cysts

Your situation is complicated.

First of all, when they tell you an embryo is "average" or "poor quality" it might actually be a good embryo. I have searched by unfortunately cannot find an amazing video to a doctor who wanted to get transferred with poor-quality embryos and had two perfectly children.

Second of all, endometriosis growth and cysts on the ovaries are not uncommon with IVF treatments because ovaries are over-stimulated and they produce even more estrogen, thus making endometriosis grow more and more quickly. There is a specific follicle-stimulating treatment for women with endometriosis and you should ask for that.

You need to seek an excellent endo surgeons who will remove your cysts and adhesions.

After an excellent laparoscopy the chances of IVF success are much higher.

If surgery is not an option for now because you don't know an excellent surgeon, I suggest you take Visanne for at least 6 months with no interruptions. It is excellent to reduce cyst size and it will most likely help you out.

Other thing: why are you going for IVF? Are you suffering from tubal infertility?

It is important to understand that endometriosis does not make conception impossible, unless the tubes were damaged. You can even conceive naturally with stage 4 endo if you get surgery, unless the tubes are damaged.

Look into the Wobenzym enzyme supplement to dissolve adhesions.

Best of luck to you!

Hi

Thanks for you reply. Yep - both tubes are blocked with blood/scar tissue. My first cycle was a long protocol which I understand is the first port of call for endo patients. I think the treatment - I was on a high stim drug for 16 days - may have played a part in my egg quality. I hope so as blaming outside sources gives me some sense of control! 🤓

I can’t have a lap as I had major abdominal surgery 10 years ago and nobody wants to touch that scarring unless they absolutely need to.

I’ll try the supplement that was mentioned in one of the earlier posts. It seems to have no science backing it but lots of positive stories.

I feel a little less desperate today :) Thank you all!

I am utterly shocked no one wants to perform surgery on you. In some cases, scar tissue in the tubes can be removed successfully, even though it's a hard procedure. I suggest you seek an experienced surgeon in the matter asap.

That supplement is quite good and has no side effects, so do give it a try!

What are you referring to when you say major abdominal surgery (if I may ask)?

You have no idea how many women's endometriosis got worse due to surgery, it's maddening!

Also, PLEASE, look into different IVF follicle stimulation treatments. If those who are administering the follicle stimulating hormones do not know a different drug plan, I would seek a different facility because women with endometriosis can see it worsen in record time during IVF!

Wish you the best!

I saw an endo specialist privately last year and at the time he suggested we avoid surgery as the endometriomas are on my ovaries and he wanted to preserve as much healthy tissue as he could. I only found out about my tubes being blocked after I was discharged from the specialist. I had a MRI on the NHS and received my report in the post. It stated “evidence of bilateral haematosalphinx”, with no further details. Google told me what this meant. 🙄 Not the best way to find out.

I had an exploratory laparotomy. I have an 18 inch scar from it.

Thanks for your reply. One thing this has made me think is that I need to revisit my endo specialist, who also works at an IVF clinic. I will see what he says. Thanks for helping me!

if I had endometriomas on my ovaries and haematosalpinx, I would ask for visanne to reduce the cysts + undergo laparoscopy (I'm in shock they perfomed a laparotomy on you just for explorative reasons. A laparotomy should only be performed in very rare cases. Laparoscopy is non-invasive and much better for women suffering from endometriosis) and I would ask the endo specialist about the usefulness of a hysterosalpingography. I don't know whether it might help or make you get worse, an endo specialist will surely know.

I wouldn't go on with IVF. You can risk a significant enlargmenent of your endometriomas if you continue stimulating the ovaries and that will only make the chances of getting good ova much less likely and you might end up with a cyst rupture.

If I were you I get the hysterosalpingography and would stop IVF altogether. If tubes are forever blocked, get Visanne for a few months, get a laparoscopy 6-9 months from now with someone who can remove the endometriomas or don't get a laparoscopy if Visanne shrinks the endometriomas enough and then restart IVF.

If one of more tubes are still partially usable, I would get Visanne + laparoscopy and then try naturally.

Wish you all the best of luck!!

One question - the only advantage of having my tubes blocked is that I know there is no fluid that leaks out into my uterus, thereby increasing the chance of miscarriage. If I start using this supplement, am I increasing my risk? As I understand it, a fully blocked tube is better than a partially blocked one, especially as I’m undergoing IVF. What are your thoughts on this?

Hey bluetop, firstly I want to guide you to the right place and that is the Nancy nook endometriosis education on FB. They are doctors who have been performing excision and are good at it, and have experience in dealing with pain. They have a wealth of knowledge on Endo. I just found it out. I hope that helps you.

Bluetop1981
Bluetop1981
in reply to Dakrav

Thanks! I will take a look :)

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