Exploring endo diagnosis

[Tinks1991]

Hi all,

This is my first time posting!

For years I have suffered with painful/heavy periods. In the last couple of years this has become worse with bloating, constipation, extreme pain (during both period and ovulation) and now starting to go through to my back.

My GP referred me to gynaecology to explore endo.

Basically, myself and my parter are actively trying to conceive. We were successful around 3 years ago but unfortunately miscarried. Due to wanting to conceive, and after sitting on a waiting list for 6 months, I have been prescribed a pill for 6 months with the view to return in 6 months time and proceed with laparoscopy should nothing improve.

I’m really unsure what to do, especially because gynae have made it clear they will not be doing anything to aid fertility, they will just be treating my symptoms.

I have been to the Gp today, who said they can make a fertility referral, however due to our circumstances I will not be entitled to IVF, only investigation.

What are people’s views on the route to take please?

Thank you in advance for your time.

[Anon1846]

I believe if they do a laparoscopy and confirm diagnosis then you are entitled to ivf, I may be wrong but if you have confirmed endo then they should support you through trying for a child

[Tinks1991 in reply to Anon1846]

unfortunately I wouldn’t have that entitlement because my partner has a child from a previous relationship.

[Hidden]

Sounds like right thing to do if you can’t beat the criteria. I went the opposite way - straight to IVF due to age but then referred for a HSG and then to an endo consultant. They didn’t want to put me through the laparoscopy as symptoms weren’t bad enough at the time but last 6 months symptoms have been getting worse. Getting to the end of my tether I have found daily exercise and vitamins have really helped, particularly magnesium.

This article helped me helloclue.com/articles/cycl...

Last three months I have felt great, still not conceiving but that’s likely my age. Bit annoyed that they could have put me through to surgery though without exploring other factors first eg) diet & lifestyle.

I would definitely get all your investigations done first (if time is on your side). Good luck! X

[Tinks1991 in reply to Hidden]

Thank you for you reply.

That’s the way I am thinking, just felt like it wasn’t a simple solution! Nothing ever is. Myself and my partner talked about heading straight into IVF but I don’t know enough about it and endo together. Would it still work?

I wish you the best of luck in your journey with conceiving.

[Hidden in reply to Tinks1991]

Thanks you too, I’m not sure, maybe something to check at your next appointment

[EndoZee]

I would really first try to get the endo fixed, it makes it harder to conceive and the risks are not good.

healthline.com/health/endom...

[Afrohair]

A lap should help with fertility although they said they are treating you for symptoms a lap helps in a lot of cases so they obviously don’t no what they are saying they just don’t want to give you ivf have a lap first and see how it goes tell whoever does it your trying so you need your fertility preserved

[Afrohair]

Also a general gyn will likely not treat you properly I’m going through the same thing if you refer to my posts you will see I’ve been prescribed the pill and all sorts x

[Tinks1991 in reply to Afrohair]

Thank you for your reply. Im hoping to go down the gyn route and go back in 6 months and ask for a lap. In the meantime get a fertility referral and sit on a waiting list for that.

It just feels like a never ending battle.

[Afrohair in reply to Tinks1991]

You will be offered a diagnosis only not treatment of severe endo

[Tinks1991 in reply to Afrohair]

Ok that makes sense I think. So if I have the lap through gyn they won’t treat it? Just diagnose it.

So I’m definitely wise going down the fertility referral route as well.

[Afrohair in reply to Tinks1991]

They will only treat it if you have a little bit but you can’t guarantee it all gone cause they aren’t specialist

[Afrohair in reply to Tinks1991]

It’s silly you have to wait 6 months they might not even offer you a lap I had to wait 3 month and been given pill aswell if you see my posts you will see what I mean I was offered diagnostic but have signs of severe endo I’ve had to book a private specialist to try and confirm not all gynaecologist no what route they are supposed to take . you have to ask and then they will only give you a diagnosis lap look at nice guidelines for endometriosis they won’t give you full treatment unless your case is severe be aware of the wording they use when discussing a lap explore and investigate means that’s all will be done

[Afrohair in reply to Tinks1991]

You also mentioned fertility treatment you must be careful because endo can still get worse from fertility drugs

[Afrohair in reply to Afrohair]

Just so you know aswell fertility referral for someone who has kids is just blood tests I’ve recently had this done they won’t do anything else you can message me if you need more help sorry to clog up your post

[Tinks1991 in reply to Afrohair]

No problem about posting, it’s all helpful.

My partner has a child so I was informed I would be entitled to tier 3 investigations under fertility. My reason for wanting this is in case the reason for infertility isn’t endo as I haven’t been diagnosed, it’s just the word that’s flying around at the moment.

It’s very difficult to answer their questions when they said “what’s more important the pain or fertility”, obviously both are very important but I’m feeling very much like I’m being pushed from pillar to post.

[Afrohair in reply to Tinks1991]

The nhs has a silly system the reason I had investigation is because I had a misscarrige and as I’ve had children they only gave me blood tests so not sure what tier 3 is I originally went to gyn for endometriosis symptoms but as misscarrige is on my notes that’s all they kept referring to I’ve come to the conclusion it’s because the general gynaecologist has very little knowledge he also put me on the pill for 3 months he said to calm my womb now we all know were more fertile after misscarrige don’t we ?i returned again for him to ask me why I’m on the pill when he put me on it!he knew I was trying to conceive so I believe they just want to pretend you’ve been treated he also would not offer me an mri as he said it’s too expensive and would not refer me to a specialist they just do it because of funds and they need a lot of paper work to prove you have endo they won’t class you telling them you have symptoms as enough to send you to a specialist it has to be written down time and time again several times

[Afrohair in reply to Tinks1991]

It’s really sad as well you can’t get ivf cause of your partner if you join the fertility part of this forum they may be ways around that people on their will know more about that as lots of people have been through this it might depend on your area so look into it

[Afrohair in reply to Tinks1991]

just don’t tell em he has a child does he have a maintenance filed against him sorry but nhs get me so mad you could say you didn’t ever know lol how would they even know that I’d like to know unless you tell them the system is that stupid they only know stuff you tell them and they can’t even get that right

[Tinks1991 in reply to Afrohair]

No he doesn’t have anything filled against him.

It’s all such a mess really isn’t it. I miscarried 3 years ago (first time falling pregnant) and haven’t conceived since. I understand gyn aren’t specifically for fertility, and I was originally referred for the symptoms (pain, bloating etc). But obviously we would like a child so that makes things more difficult, although it shouldn’t.

She told me tier 3 was investigation only and I wouldn’t be entitled to IVF because my husband has a child.

I’m going from both angles so while under gyn, taking the pill for now, going to go back in 6 months and ask for lap no matter what.

At the same time, we will get a fertility referral (no doubt be on a waiting list) and then explore the investigation of why we can’t fall.

[Afrohair in reply to Tinks1991]

It will be a diagnosis lap they may find something but may not they may say endo is the cause but once you have that lap you may be referred again to another specialist another 6 months .how old are you?

[Tinks1991 in reply to Afrohair]

I’m 28, I have suffered with these symptoms for years but never went to the GP until recently.

[Afrohair in reply to Tinks1991]

Ok hope you get sorted soon x

[Tinks1991 in reply to Afrohair]

thank you, and you.