Fertility clinic specialising in endo pat... - Endometriosis UK

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Fertility clinic specialising in endo patients?

Cariad82 profile image
13 Replies

Hi

I am currently on my 4th IVF cycle. I have stage 4 endo and adenemyosis. I am looking to move IVF clinics after this cycle if it's unsuccessful. I don't feel my clinic have much expertise treating endo patients. I have discussed specialist protocols wiht them etc. and they aren't really aware of different options available. I want to be with a clinic that is up to date on the latest research - I feel like I'm doing all of the research for my clinic at the moment!

Does anyone know of any IVF clinics that specialise in fertility treatment for endo sufferers?

Thanks.

13 Replies
StefaniaJW profile image
StefaniaJW

I was on an endometriosis facebook group the other day where IVF and endometriosis were discussed. Every single woman who went through IVF while having stage 4 endo said they never managed to conceive and just lost lots of money. All the women with stage 4 endo who conceived were the once who underwent advanced excision surgery with a REAL specialist with in-depth training and a lot of experience. I can provide a list of highly skilled excision surgeons who will be able to help you more effectively working within the NHS in the UK. If you go straight to IVF with stage 4 endo, you will probably have cysts, nodules, organs pulled by adhesions in one direction or the other. How can you expect to conceive like this? How can you expect an embryo to implant in such an inflamed and anatomically upset environment?

Get endometriotic lesions, cysts, nodules removed asap through advanced excision and then try naturally for a while. If it doesn't work, move on to IVF, but at least in that case the chances successful outcome will he higher.

Cariad82 profile image
Cariad82 in reply to StefaniaJW

Hi StefaniaJW

thank you for your response. I have not gone straight to IVF with stage 4 endo. I am fully aware that would not be wise and I'm not expecting success currently. Please do not assume I am naive or stupid.

I had 3 IVF cycles before I was diagnosed with endo. Prior to starting IVF we tried to concieve for years and we both had all the traditional fertility tests which showed no issues of note. It was only after 3 failed IVF cycles and an issue with access to my ovaries at EC's during each one that I was finally referred for a lap and hysteroscopy, despite previously asking for more investigations and being told they weren't needed. The lap diagnosed stage 4 endo and adenomyosis. It is pretty much silent endo so I didn't have traditional symptoms to warrant investigation before that. I only got my diagnosis in September. I have since seen a REAL endo specialist whom I chose based on careful research. I go t a private consultation to speed up my access to him and am now under his care at an NHS BSGE accredited endo centre. I have also paid for a private MRI since my diagnosis to get a full picture of the endo. Again not wanting to waste time and wanting to gather all of the information I could. I will be having excision surgery with this specialist in the new year.

My first cycle was NHS and then I bought a 3 cycle package with my clinic as it was more cost effective. Unfortunately the T's & C's of the package said I have to do the 3 cycles within 1 year. That's why I am doing my 4th cycle right now despite me having the endo diagnosis and awaiting surgery. My clinic were unwilling to defer my final cycle until after I have had the surgery, even though my endo consultant spoke to my fertility consultant direct and asked them to. It was a case of use it or lose it. So I am doing the cycle on a new long protocol that is recommended for endo patients. I am an IVF poor responder so previously have only done short protocols and a long one wouldn't usually be recommended for me. However long protocols are traditionally used for endo patients so I'm using this cycle to find out if it works for me, since I already know there's a good chance the EC will go badly due to the adhesions and resulting poor access to my ovaries. I'd rather than find out now that this protocol doesn't work for me than have that disappointment after having had the surgery when my ovaries might actually be accessible.

StefaniaJW profile image
StefaniaJW in reply to Cariad82

I don't think you're naive at all and I get it now it's a 4-cycles-pack of IVF. It's so sad how physicians play with people, having them have to undergo something that most likely won't work. I hope your specialist is actually extremely skilled as not as BSGE centres are at all.

Cariad82 profile image
Cariad82 in reply to StefaniaJW

My specialist came highly recommended and I have researched him thoroughly. I didn’t get him via the local BSGE centre - I went to him independently and he has now referred me to the BSGE centre he works with so he can treat me there under the NHS. So hopefully he will be able to help me and hopefully I ultimately conceive. At least I know what the issue is now instead of being constantly fobbed off with ‘unexplained infertility’.

StefaniaJW profile image
StefaniaJW in reply to Cariad82

Yeah, "unexplained infertility" is an the worst way to define endometriosis. I wish you the best!

Cariad82 profile image
Cariad82

Thanks for your reply. My endo specialist is based at St Mary's in Manchester and has access to the fertility services there. When I initially started down the IVF route (before I was diagnosed with endo) I was with St Mary's for a short time, but they were a nightmare - losing my paperwork, very poor communication etc. So I ended up moving to the clinic I'm at now. I don't really want to go back to St Mary's.

Cariad82 profile image
Cariad82

Thank you for the link and the info on the ESHRE guideline. I will read both with interest. My endo consultant did say it’s likely surgery won’t be of benefit in terms of ivf outcome but there’s a small chance it will because i specifically have issues with ovarian access. So I decided to go ahead - If the ivf is all ultimately unsuccessful I want to feel like I’ve done everything I can and if I don’t have the surgery I will always wonder if it might have worked if I’d had it.

Cariad82 profile image
Cariad82

Thank you x

Purplewitch18 profile image
Purplewitch18

We are going to Bcrm in bristol, there is a specialist in both there its the main reason i chose to go there x

FingersXssed83 profile image
FingersXssed83

Fancy seeing you on here 😞

I’m starting my first ever down reg FET on Weds. Surgery was mid Sept. I’m also looking for alternatives to Dr Lowe for future retrievals. Haven’t had a good recommendation yet.

Here’s hoping excision does the trick for us both x

Cariad82 profile image
Cariad82

Hi! How are you getting on?

When you say alternatives to Dr Lowe do you mean another consultant at the same clinic or a whole new clinic?

I’ve just finished my down reg and am on day 3 of stims. I have almost no hope for this cycle. Just trying to look at it as an experiment on a new protocol. I feel like my ovaries aren’t going to wake up from the down reg.

Did you end up writing to your CCG? Any joy?x

I’m in London at the beginning of December so have made an appointment with ARGC for a consult. If my current cycle and the one after (NHS) fail then we’re going to seriously consider going with them even though it’d be a massive hassle and expense having treatment in London. They just seem to have a much different approach to most clinics and a lot of people have recommended them as a last resort place. So I want to see what they have to say. X

SerrineV profile image
SerrineV

The clinic we were successful with treats the tougest cases. So your endo could not be ''too challenging'' for them, surely. Moreover, they offer all inclusive ''guaranteed'' packages. Meaning they'll try unless are successful# Guaranteed success package 9.900 euros includes the following services: 5 embryo transfers; In case of 5 negatives they refund the money paid; Medical treatment; Medications needed before transfer and 3 months after; Egg donor fee; Sperm donor (if needed). Pregnancy monitoring till 12th week. Embryo reduction (if needed). Services of the coordinator in charge of the program; Accommodation; Meals; Transfer from/to the airport and from/to the clinic.

Hope this is useful.

Purplewitch18 profile image
Purplewitch18 in reply to SerrineV

Where is this clinic?

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