Newbie

[WeeJacs]

Hi all I'm new on here, TTC for past 5 years now. Both 35years and diagnosed with unexplained infertility until last January where doctors found significant Endometriosis between my left tube and ovary. 2 IVF attempts, both ending in MC. Lots of tests done, and no reason found. Docs don't seem to think there is a link between Endometriosis and MC, however I'm now beginning to disagree. I am concerned that Endometriosis had in impact on my egg quality. Anyone else have any thoughts on this? x

[vic77]

Yay you found us☺☺☺you will get masses of support and advice on here😊I don't know a thing about endometriosis sorry and I am so sorry for your losses. We also have unexplained infertility which I think is the worst..I want an explanation for all this pain..however we plod on with more and more treatment nothing else for it I guess..lots of love xxxx

[WeeJacs in reply to vic77]

Hi Vic we were unexplained until I kind of forced the issue for having a laparoscopy. Even tho I didn't have the usual Endo symptoms I had a rough idea that something wasn't right and by god I wasn't wrong....I just don't believe that it's unexplained there has to be a reason. Plodding along is the only thing for it. It is just so hard to take but we're not for giving up x

[72cloud9]

Im so sorry, I cant give u advice in this area. so sorry that you had to go thru miscarriages, so heartbreaking. Not sure if you have done your treatment thru NHS or private but either way might be worth paying another clinic for a consultation to get their take on this? a second opinion might shed light on your view on this or reassure you on what your current docs are saying. Its important that u feel confident in the treatment x

[WeeJacs in reply to 72cloud9]

Hi 72 yes it was 2 NHS cycles we have had. We are not financially in a position at the moment to think about a private clinic. It's taken 2 and a bit years of our life away so we're planning a year off before starting all over again. Although our clinic is NHS it has the best success rates in Scotland so I am thinking about staying with them but not 100% sure yet...thank you for taking the time to respond ❤️ x

[Hollibob]

I've got endo..have had 2 unconfirmed MC's and 2 with IVF. 3 fresh cycles and 1 frozen...

The consultant we had said he didn't think endo affected IVF as it bypasses the problem areas, but like you, I can't help but think it interferes!

I've got a low amh for my age and the consultant said it wasn't surprising after having had laparoscopies and endo removed from the ovaries.

One thing that I read said:

Some researchers suggest that the woman’s body may form antibodies against the misplaced endometrial tissue. The same antibodies may attack the uterine lining and cause miscarriages (up to three times the normal rate).

The difficulty is that every consultant has a different opinion on what they believe in and sometimes even if you think otherwise, you want to trust their medical expert opinion because they are the specialists?!!!

[WeeJacs in reply to Hollibob]

I haven't seen an Endo specialist. I'm in Scotland I think there might only be 1 clinic but no where close by. There is talk about 1 opening up in Glasgow but that will be in a year or so. I'm thinking of travelling down to Coventry to see Dr Quenby. Are you in the U.K.? She specialises in raised NK killer cells which can be a major factor in ladies with Endo x

[Hollibob in reply to WeeJacs]

I'm not sure if you have seen this website before to locate endo specialists?

bsge.org.uk/centre/

I've heard about Dr Quenby and have often thought about going, but the last round of IVF I was put on blood thinners and steroids as a trial.. I'm not sure egst medication they would advise if nk cells are high. There are quite a few ladies on this site that have been up there for the biopsy...

[WeeJacs in reply to Hollibob]

Thank you Hollibob! I've just looked it up and Edinburgh will accept referrals from other health boards. I have an appt at my NHS fertility clinic on the 11th May so I'll be asking for a referral to be reviewed by them. It can't do any harm. I just feel I want to look into everything before we embark on our next cycle. We will be self funding to want to make sure we have the best chance. From reading into Dr Q it looks like even the consultation is worth it and the biopsy acts as a scratch too. What are you thinking now? Are you thinking of doing another cycle? x

[Hollibob in reply to WeeJacs]

You could always approach your GP to ask for the referral and push it along a bit, instead of waiting until May?

After our last cycle which was privately funded, the consultant indicated that we could go to another clinic to get a second opinion, but he recommended one..makes me wonder why OR to consider egg donors.

I'm more happy about egg donors then adopting, but obviously in an ideal world would have loved the genetic connection.

We've had a bit going on this year, but when we do look at the next step, we will be using Access Fertility...pay a lump sum and if it doesn't work then there is a refund programme...

[WeeJacs in reply to Hollibob]

I had a look at the Endo clinic but they only accept referrals from GP if you live in that health board so it needs to be consultant that referrers me. I like the idea of Access Fertility. We're having a year off. Booked a few holidays that we want to enjoy before trying again. It's soul destroying isn't it, esp when everyone around you is falling pregnant. My best friend fell at the same time as me, I would've been due in 2 weeks 😔 x

[Hollibob in reply to WeeJacs]

It is..this month is the anniversary of when one of the miscarriages happened..

I've learnt to push and ask for stuff with the medical professionals as it's only us that has to live the experience.

Glad you have got fun stuff planned too 🙂

The ladies on the Fertility Network UK forum on here are lovely too..so might be worth joining that one?

[WeeJacs in reply to Hollibob]

I just joined that today ☺️ great to chat to others who understand x

[CE_88_14]

Hey WeeJacs I'm in Scotland as well :-D. I get where your coming from I was unexplained and we have been trying for nearly 3 years. Out first cycle got stopped January this year as I didn't stimulate properly and by sheer fluke I found out I had endometriosis when I had to get my appendix out unexpectedly last November. Like you they said the endometriosis wouldn't affect my fertility but I'm in pain a lot of the time so I think it must affect it. I told my GP to refer me up to a specialist in Aberdeen ( I'm near Dundee) as there is a BSGE centre up there and as I have BUPA I've been lucky enough to go private so I'm due to get operated on the 27th of this month. Really hoping that once its removed it will help get better results at our next cycle. I've added a link to my consultants website if you want to have a nosey. xXx

kcwomenshealth.com/

[WeeJacs in reply to CE_88_14]

Hi CE I'm in Glasgow...has your GP referred you to the specialist centre? The nearest to me is the one in Edinburgh. I called them and they would be happy to see me but it would need to be my gynaecologist that referrers me. I have made an appt to see my GP to be re-referred back to Gyn as after I had my Lap they didn't really want to see me again unless my symptoms get worse. They managed to remove the small deposits on the uterus but my right tube and right ovary are fused. I have no real symptoms from that so they suggested just leaving it....I have had 2 IVF attempts but both ended in a MC. Where did you do your cycles? Your lucky you have Bupa, wished I had that x

[CE_88_14]

Ye I told my GP to refer me to Aberdeen to the specific specialist I wanted, she was abit reluctant and asking about symptoms etc but I demanded the referral and said I would be going private. When they took out my appendix they didn't touch the endometriosis they said it was mild but I am symptomatic and it can be horrendous. My left ovary has an endometrioma and is stuck to my bowel, mine is mainly on my left side but since having my appendix out I have started getting pain on my right but thinking that might be an adhesion from that surgery. I'm at Ninewells in Dundee for my IVF. Ye its a benefit from my work you can opt to have BUPA just lucky I did it when I first started 10 years ago so its not classed as a reoccurring issue. I have never been pregnant and my first cycle was stopped due to poor stimulation and I think that is because my left ovary is my dominant one and it had a cyst on it xxx

[WeeJacs in reply to CE_88_14]

My symptoms are mainly my with constipation at certain points in my cycle...so I think I have it on my bowel too but they couldn't find it during my Lap but at my review he said it could be much further down. That's good GP referred you, let me know how it goes. I'm new on here, been on the fertility friends too but taking a break from that for a while. I'm just hoping when I get to see the consultant they agree to refer me to the specialist centre. If I was to have further surgery he said it would need to be open as my Endo on my tube is too near a majors artery. Have you ever heard for raised NK killer cells? I'm looking into this too...we're taking a year off of IVF so really want to be ready when we decide to go again as we're self funded now x

[CE_88_14]

Constipation has been an issue for me since I was 18 and they misdiagnosed me with IBS after my first lap 6 years ago when endo wasn't seen.Ye I have read what people on here have said. I don't know if it is definitely a factor but I know they attack infected host cells so maybe if they are raised they will attack any embryos? I've heard of people taking steroids and other thinks to inhibit the immune system during IVF but not 100% sure that's linked to NK cells or not but if the blood test doesn't cost a fortune it cant hurt. I'm lucky I've still got a try on the NHS so if that fails then I will look into other factors that can contribute to failure. Good luck to you and if you ever need to speak just give me a message :-). xxx

[WeeJacs in reply to CE_88_14]

I have been researching raised NK killer cells and they seem to be a factor in woman with Endo. It would be a biopsy of the womb, only available from Dr Quenby in Coventry. It's a cost of £500 then she advises what meds should be added into the next cycle. Acts as a scratch too. I'm really thinking of going down to see her especially after our last cycle was successful again but ended mc. Consultant at the Glasgow Royal said it would be worth it to see what's stopping my pregnancy from continuing. Tho I'm also thinking that my Endo has affected my egg quality. So many ifs and buts it's unfair eh 🙄 x

[CE_88_14]

Ye it is shit I'm so sorry for your losses :-(. That does sound like a good idea if it will get you answers and its not like its an obscene amount of money in the long run. I read that if you have an endometrioma on your ovary because it takes up essentially all of your ovarian tissue, eggs can be squashed or not good quality due to this and also because my ovary is stuck to my bowel maybe my tube cant pick up what eggs are released. Hoping my second cycle works as these issues should be resolved or I will look into further investigation also as I was told mine was mild and wouldn't affect fertility. I'm also a little worried I just don't artificially stimulate since last time there was only 2 follicles after 10 days of injections and not sure there is much they can do to remedy that except up the injections. Are you thinking about going for the procedure soon? Is there a long waiting list? xxx