Losing hope

I was diagnosed with endometriosis in 2013. We have been trying to conceive for 8 months with no joy. Each month when I get my AF I feel more and more deflated. I'm currently on the waiting list for another laparoscopy. Any advice would be great!

[Leesalou]

My younger sister sufferers badly with endometriosis and she has a baby naturally his now four,

So don't lose hope,

Hopefully your 2nd laparoscopy will give you more answers, try and stay positive I know it's harder said than done, wishing you lots of luck on your journey,

Xx 🍀🍀

[Hidden]

Ask them to excise (cut out) not just burn the endometriosis legions off - this is the gold standard in endo care and it's really the only thing that helps.

Are you getting treated at a BSGE accredited Endo Centre? I'd recommend that.

What stage are you? Try not to stress too much. 8 months of trying isn't unusual but with the endo diagnosis, it's probably better have the second surgery sooner than later.

What's the reason for the 2nd surgery? And did they treat it in the first op?

I have been very poorly with endo (stage 4, obliterated POD, recurring bilateral endometrioma, and adenomysis) - I had a few surgeries, as my endo was incredibly symptomatic - I tried naturally with no luck, then had IVF and it miraculously worked first time, even with my v low AMH. So, there is hope. And if you are symptomatic, then surgery prior to IVF would be wise.

xxx

[Hidden in reply to Hidden]

I have never been told what stage im at. The first surgery I had I was never given an option to have lesions removed etc, They told me I could either have the coil or ttc. I had the coil which was the worst decision i made and end up being put under anaesthetic to have it removed as it had moved. I have since requested my hospital notes which state they offered me treatment! Complete lie! Im having the second laparoscopy due to struggling to conceive and highlighting I never had any of the lesions removed. How do i know if its an BSGE Accredited endo centre?

I feel like I have been ignored and misled for so long I don't actually trust the medical professionals anymore!

[Hidden in reply to Hidden]

So your first surgery was just the diagnostic lap, you need an operative lap where they actually do something to treat it. I'd imagine you don;t have a severe stage, if they didn't tell you.

Here is a list of all the accredited Endo centres.

bsge.org.uk/centre/

You have the right to request referral to where you would like.

Is your hospital in this list?

And regarding feeling ignored, sadly - this is typical of patients with endometriosis and all to common. An average of 7 years to diagnose, still.

Be pushy, tell the Dr what you expect. If you need help - I am here. xx

[Hidden in reply to Hidden]

Thank you so much. It took 13 years for me to get the diagnosis. I have had problems since starting my periods at the age of 11 and I just got told it was psychological.

My hospital isn't on the list of endo centres but it's a hospital I requested to go to.

The gynaecololgist im under now has questioned why I was given the coil and why I was never offered treatment. Hopefully it won't be much longer until I get some answers.

Was your pregnancy pretty straight forward when you did get pregnant?

[emmab178 in reply to Hidden]

Can only echo what iloveeggs is saying here as general gynaes seem to think they are qualified to touch endo when they aren't if it's severe. Under nhs NICE guidelines if you have severe endo it should only be treated by a bgse centre as they have multidisciplinary surgeons on hand incase it's infultrated your bowel or urinary system.

Most gps have to be educated in to what the nhs treatment pathways are as they wrongly send women to general gynaes for endo when symptoms, scans or previous laps suggest it's severe and therefore you need a specialist surgeon.

Anything suggesting you have it on the bowel, ligaments or POD and it should be straight to the bgse by referral from the gp.

[Newqgirl1]

I had lap to remove endo and they said the next 6 months were best chance to conceive. After almost 4 years of trying I'm finally starting ivf treatment all I would say is don't give up but don't wait too long before asking for referral to fertility team! Good luck with your lap and ttc xx

[Tugsgirl]

My friend is 15 weeks pregnant with her first after ttc for over a year. Not long ago she was diagnosed with endo stage three. She had a lap and conceived the second cycle after. She will be 38 in September xx

[Mrsjj]

My friend had/ has endo and was told she wouldn't be able to have kids. She has had two laparoscopy as far as I know I've over the last 6 years and is awaiting the arrival of her third baby in the same time I'm having one. It isn't the end please don't give up. I believe you can research specialist doctors in your area whether NHS or private as they do cross over.

[Hidden]

No advice but my friend and SiL have endometriosis, the former very badly, and both have children. My friend had 2, though it took her a bit of time, but my SiL fell very quickly. It's really hard not falling each month but try to keep positive x

[Ardenrose]

Gia I'm sorry but this information is incorrect and could prevent someone from getting the treatment they need. For a start endometriosis may behave similarly to cells from the lining of the womb but it has been proven that they are not the same.

Secondly, research does show that women have better fertility outcomes (including conceiving naturally) after having proper excision surgery with a specialist. The reason being that the presence of endometriosis creates an unhealthy environment for a foetus. There may be many reasons why endo could prevent a pregnancy such as blocked tubes and ovarian cysts. If these types of problems are found it is imperative that they are dealt with by a skilled surgeon. Of course there are risks of scar tissue with any surgery, including a laparoscopy, which is why it is so important to see someone experienced in performing excision surgery. At least if someone has excision surgery, they are less likely to need repeat surgeries in the future (which again prevents the risk of further scarring).

[Hidden in reply to Ardenrose]

Agree, and it is possible to conceive with endo. I know people who conceive fairly easily with the milder stages of endo. It's more difficult wth the latter stages, when the tubes and ovaries are impacted.

So, let this not scare you too much. It's better be informed of the pathways if your endo is severe, but let's not all scare you if your endo is one a few patches - as it is with many women.

[Hidden]

Excise is the GOLD STANDARD of treatment for Endo Gia_9. This is simple fact, please do not behave like a Dr when you are not.

Burning the endo legions alone, does not address the route of the endo legion so it grows back after surgery - which is why so many women have repeat surgeries.

Also, scarring IN the uterus - as you said - is incorrect. Endo may cause scar tissue and adherence o the outside of the uterus, and you may also have adenomyosis, but the endo and scarring is NOT INSIDE the uterus.

And, as I have replied already - YOU CAN CONCEIVE WITH ENDO NATURALLY, mainly if you are stage 1 or 2 - I myself have friends with patches of endo who have 1 2 or 3 children naturally. So let's not scaremonger here.

Sarah89 needs another lap - where they EXCISE cut out, any endometriosis - even if she only has a few patches, and this may well help her get pregnant naturally within months of the lap.

All gyneacologists will tell yo to try naturally for 6 months post lap, even if stage 4, as they did with me - prior to moving onto IVF.

Gia_9 you are just scaremongering with very little knowledge. Please do research first and consider your answers carefully.

[Hidden in reply to Hidden]

I did get pregnant before back in 2014 but unfortunately miscarried at 7 weeks. So hopefully after the endometriosis is cut out itll happen again and have a happy ending x

[Hidden]

No one said it worked perfectly. But saying things like the only option I could be left with is surrogacy is not something that I really want or need to hear right now.

To say things like it is impossible to get pregnant prior to the laparoscopy and that youve not known anyone of my age range with endometriosis get passed it and conceive naturally isn't giving much hope is it?

I understand that even after the laparoscopy,it's not a given that I will conceive naturally. But atleast once I have had the op, it will hopefully be clearer what is going on and alternatives can be discussed with my gynaecologist if necessary.

Endometriosis is a horrible and very difficult condition to live with but I thought this was meant to be a support group, not to make people feel worse?

[Lizzielizzielizzie in reply to Hidden]

My friend got pregnant the first month after a treatment lap and her lovely baby boy is a year and a half. I got pregnant first month after a lap where I had minor ablation of endometrial patches. Sadly I miscarried but that's due to other factors (probably male). Neither of us was treated at a bsge centre. It's likely that a lap will help. If you join the endometriosis uk forum you can find out more about bsge... my understanding is that these centres are for endo which has been diagnosed as being very severe or affecting the bowel. Lots of people are very critical of general gynaes but basically I think you just need to have the confidence that your surgeon will not attempt to treat anything which is beyond their expertise and will refer you on if necessary. Good luck!