Endometriosis

[Pinklady81]

Hello

I have had an ultrasound and diagnosed endo on both ovaries at least ... to cut a long story short I've had an ectopic in 2019 and now I'm 40 I'm beginning to lose hope. I am on waiting list for surgery to remove endo I'm debating whether to go forward for ivf it will have to be paid privately due to stepchild but consultant said ideally uterus and surrounding areas need to be in best situation possible before ivf so have surgery but then have recovery time etc or do I try ivf with my current situation of endo? I know time isn't on my side has anyone got any advice ?

Hi @Pinklady81 , from what I understand, endo has to be quite bad to be diagnosed via a scan. I would also research if being on your ovaries it is more likely to impact egg quality? I think given your age and situation I would have the operation before IVF to give yourself the very best chance of success.
I also think a laparoscopy could identify any other issues which can't be diagnosed otherwise.
Good luck with whatever decision you make!

I am on the waiting list for a laparoscopy but obviously this could take time it was seen on my ovaries so not sure how bad it is but it is there

@Pinklady81 didn't want to read and run but hopefully she'd a little light and hope. I too had severe endometriosis which was visible on scan of ovaries, I had excruciating pain every month and that was the first part of my journey was to have the lap, get it treated, calmed down by a hormone called prostap which is a menopausal injection and then continued with ivf. My first round failed but my second round resulted in my beautiful 1 year old boy. I'm back on the ivf journey this time doing a FET cycle. I feel times not quite on my side with the extent of my endo so wanted to get moving quickly. Had a scan last week and they can see the endo on my bowels and surrounding area however I'm yet to find out what this means in relation to going for FET or if I need another lap. I'll keep you posted as I'll find out more on Friday. Hope that helps, keep strong x

I am in the same predicament currently on waiting list for the lap to remove endo and then will continue with naturall trying/ ivf

I am 29 so time slightly less of an issue so perhaps if I was in your case if the wait for the lap was 2-3 months I would wait for that and then do IVF
But if the wait for lap was 6+ months I would be tempted to do ivf now and see how things go

I am in the same predicament currently on waiting list for the lap to remove endo and then will continue with naturall trying/ ivf

I am 29 so time slightly less of an issue so perhaps if I was in your case if the wait for the lap was 2-3 months I would wait for that and then do IVF
But if the wait for lap was 6+ months I would be tempted to do ivf now and see how things go

I am just unsure what to do even debating to pay private and have the lap done, I'm not in significant pain its painful yes but now they have did endo is on my ovaries I am just at a compete loss what to do and my age just is adding to it all I am just a little bit lost and heartbroken

@Pinklady81 is the endo in your ovaries formed as cysts? Also, just wondering is the wait list for endo removal advised before you start your ivf or is it something you chose? After my lap I still developed cysts during stims which were monitored however they did go away and even tho the cyst removal has damaged my right ovary I did manage to get a fair few eggs which was surprising to everyone. If I were in your position and financially it were possible then I would go privately with the lap, especially if it's weighing on your mind - always follow your gut. The only reason I mention that is I know from my own experience my clinic and gynae wanted me to wait at least 6 months for everything to calm down so not to put pressure or risk on my body so I guess that'll move things forward a bit quicker for you. They can work around endo with ivf as well but for best chances it's always good to know you've given it a go with the lap for a better environment if that makes sense? Risk wise with a lap especially on ovaries, which they will explain, is it can cause some degree of decrease in the egg reserve. Endo really is so sh**!
It feels like you can't win either way but I'm sending you lots of solidarity & big hugs x

I have no funds to do this myself but parents have said they will help! They haven't said my GP isn't great and said they are attached on ovaries? My GP asked me what I wanted to do as I don't think they know they said do I want to have lap or go forward with the fertility clinic referral? I just feel this isn't going to happen for me and every where I turn there are people with babies, sorry I am just feeling so overwhelmed and a bit of a failure!

@Pinklady81 firstly, you are in no way a failure. Never ever tell yourself that. It's very hard when a gp gives you a choice because ultimately you're putting your trust in them to guide you 🤦🏻‍♀️ I think a referral would be a good idea as you'll then be dealing with the clinic who will have all the possible scenarios and options available to you and you'll be under their care. My endo was treated prior purely to the fact it was so excruciating it was leaving me bed ridden and unable to carry out daily tasks. I would say go for the referral and let them guide you lovely. It's great that parents are able to help out, they will want the best for you and things truly are possible. Completely understand the whole "babies everywhere" even now after a success for us only with ivf it still pains me at the thought of this only being our option for future babies. It seems so unfair and so cruel but remember this is your journey and I hope that brings some form of comfort in a way, allow yourself to feel all the feels...but don't give up just yet x

[quote Bluemeadowbaby]@Pinklady81 firstly, you are in no way a failure. Never ever tell yourself that. It's very hard when a gp gives you a choice because ultimately you're putting your trust in them to guide you 🤦🏻‍♀️ I think a referral would be a good idea as you'll then be dealing with the clinic who will have all the possible scenarios and options available to you and you'll be under their care. My endo was treated prior purely to the fact it was so excruciating it was leaving me bed ridden and unable to carry out daily tasks. I would say go for the referral and let them guide you lovely. It's great that parents are able to help out, they will want the best for you and things truly are possible. Completely understand the whole "babies everywhere" even now after a success for us only with ivf it still pains me at the thought of this only being our option for future babies. It seems so unfair and so cruel but remember this is your journey and I hope that brings some form of comfort in a way, allow yourself to feel all the feels...but don't give up just yet x[/quote]
I know I think with it being so raw I don't know what else to do and I can only speak to GP via the telephone and she just read report out and said she's no expert and what did I want to do...: if I pay for the lap privately it also means ivf private too so I need to win the lottery! I may just put referral in and see what they say thank you for your advice have you the one little one?

@Pinklady81 that's so unhelpful of your gp I'm so sorry you've just been left with that response from them. Im keeping my fingers crossed for you whichever path you choose to go down 💕 ah I see, I didn't realise that's what would need to happen if you went privately. Yes just the one, I honestly never thought it would happen and I count my blessings. We were given such a low chance of success because of the endo so I was very surprised and still very overwhelmed...I can't quite make sense of it, I think people think sometimes when you get to the goal you want everything you went through disappears so I'm struggling to explain to people how overwhelmed I feel. That's why I hop onto these boards to try and comfort other ladies if I can 🥰 x

[quote Bluemeadowbaby]@Pinklady81 that's so unhelpful of your gp I'm so sorry you've just been left with that response from them. Im keeping my fingers crossed for you whichever path you choose to go down 💕 ah I see, I didn't realise that's what would need to happen if you went privately. Yes just the one, I honestly never thought it would happen and I count my blessings. We were given such a low chance of success because of the endo so I was very surprised and still very overwhelmed...I can't quite make sense of it, I think people think sometimes when you get to the goal you want everything you went through disappears so I'm struggling to explain to people how overwhelmed I feel. That's why I hop onto these boards to try and comfort other ladies if I can 🥰 x[/quote]
Hello

Is your endo really bad? I was thinking I didn't have it as pain isn't at the moment anywhere near as some stories like yourself! But they have detected it through ultrasound so some people are saying it must be bad and that's making me really stress. I would have to pay for ivf privately anyway due to step son so lap can be done on the Nhs it's just the waiting game for that . Thank you for your helpful comments I'm getting myself in a state reading posts about ivf etc and just not helping myself really

@Pinklady81 if you ever need a run down of ivf with endo I'll happily share if it helps in anyway.
My endo is very severe but I knew about it from the pain and it was visible on the scan but I recently had a scan last week as a check up and asked the sonographer if it being visible on the scan does that mean it's bad and she said no, it just means it's there. So I took some comfort from that.
My endo was found in and on bowels, tubes which were hydrosalpinx (leaking/blocked) has symptoms of blocked tubes due to stomach pain - had these removed - stomach, ovaries, pouch of Douglas and uterus. I don't want to scare you with that as sometimes and most of the time endo is mainly present on ovaries and uterus and treatable however mine was of the extreme side due to having it masked for such long periods of time from contraception. I have always suffered very badly from being a teen, it didn't just grow when we were trying to conceive - if I were with you now please take all that as encouragement. I'm really rooting for you 💕 x

[quote Bluemeadowbaby]@Pinklady81 if you ever need a run down of ivf with endo I'll happily share if it helps in anyway.
My endo is very severe but I knew about it from the pain and it was visible on the scan but I recently had a scan last week as a check up and asked the sonographer if it being visible on the scan does that mean it's bad and she said no, it just means it's there. So I took some comfort from that.
My endo was found in and on bowels, tubes which were hydrosalpinx (leaking/blocked) has symptoms of blocked tubes due to stomach pain - had these removed - stomach, ovaries, pouch of Douglas and uterus. I don't want to scare you with that as sometimes and most of the time endo is mainly present on ovaries and uterus and treatable however mine was of the extreme side due to having it masked for such long periods of time from contraception. I have always suffered very badly from being a teen, it didn't just grow when we were trying to conceive - if I were with you now please take all that as encouragement. I'm really rooting for you 💕 x[/quote]
Thanks she said I have a pocket on my appendix I have a had a hystersalpinogram and the dye flowed through but that doesn't mean to say there isn't anything in my tubes and had an ectopic so things aren't looking good! But today I feel more positive yesterday all I did was cry after work

Hello I would love to hear your story so if you want to send me a message don't know how you do this as I'm nee on here but thank you 🙏

@bluemeadowbaby thank you for giving us hope ❤

@pinklady81 we are contemplating private but it's about 3k and we are putting aside some money for private ivf if it comes down to it.

I am not sure how severe my endo is but it was visible on the scan BUT I have conceived twice (miscarried both) but atleast the tubes must not be that affected in my case

[quote Annny27]@bluemeadowbaby thank you for giving us hope ❤

@pinklady81 we are contemplating private but it's about 3k and we are putting aside some money for private ivf if it comes down to it.

I am not sure how severe my endo is but it was visible on the scan BUT I have conceived twice (miscarried both) but atleast the tubes must not be that affected in my case[/quote]
Hello Annny is that £3k for a lap? I'm clutching at straws don't know what to do due to my age my GP has been nigh on useless and can't seem to get any advice so I'm reaching out on here . X

@pinklady81 yep that's the price I have seen online for the lap

What I have heard from people on the ttc boards Is that even though the waiting list was supposed to be 6 months, they ended up getting seen and had the operation quicker. Have they said how long your waiting list is?

If I am honest if I was a bit older and i had the money i would be very tempted for private. Because i am young ish and amh is good i am prepared to wait the 6 months for the lap i think

[quote Annny27]@pinklady81 yep that's the price I have seen online for the lap

What I have heard from people on the ttc boards Is that even though the waiting list was supposed to be 6 months, they ended up getting seen and had the operation quicker. Have they said how long your waiting list is?

If I am honest if I was a bit older and i had the money i would be very tempted for private. Because i am young ish and amh is good i am prepared to wait the 6 months for the lap i think[/quote]
I was spoken to via telephone last June for a lap as it was suspected but just keep getting letter last saying on the list still. The consultant said l she would try snd push it through as it's now diagnosed that was 2 weeks ago! I don't have the money at present but parents said they would help

@Pinklady81 I'll drop you a message over tomorrow lovely x

Also I agree with @Annny27 that for me was true, the waitlist and diagnosis for endo through laparoscopy on average can be years if not trying for a baby. Little bit of background which I'll send in message but I had been having pain and not able to conceive for 2 years (in denial for those years that something was wrong and scared of outcome/reality) when I decided to go to gp and said I was trying that was in the March, sent for scans in may, waitlist was until the July and referral for ivf after diagnosis was the January - would've been quicker if the tubes didn't need removing which was in the November x

I know they've had waitlists for laps due to covid so may be the reason for the long wait. Don't lose hope! X

@Bluemeadowbaby

I know they've had waitlists for laps due to covid so may be the reason for the long wait. Don't lose hope! X

Ok so do you think it's worth ringing and asking about waiting time and saying I'm ttc and age? Sorry for all the questions I don't know how to private message so if you want to you can x

@Pinklady81 I've sent you a pm - just open Mumsnet in browser not app and hopefully you get it x

I saw a consultant about my endo when I was trying to conceive - I’ve had one lap and an endo cyst on my ovary removed in my twenties, they didn’t want to do any further removals in my thirties prior to ivf in case it caused extra scarring. My ivf clinic seconded that and thought it was more important to get the ivf done. As a PP says, the ivf clinics can work with endo. Also second what PPs have said on removal from ovaries affecting your eggs as I had that on the ovary where they removed my cyst. I remember my gynaecologist in my twenties saying it might affect my future fertility but who worries about that at 24?!

I would pay to see a consultant privately just for a chat about it. That should help guide you. FWIW, I was told they would reconsider doing a lap removal of more endo if ivf didn’t work.

So I had quite different advice from previous posters. I really hope it works out for you!

@Passanotherjaffacake

I saw a consultant about my endo when I was trying to conceive - I’ve had one lap and an endo cyst on my ovary removed in my twenties, they didn’t want to do any further removals in my thirties prior to ivf in case it caused extra scarring. My ivf clinic seconded that and thought it was more important to get the ivf done. As a PP says, the ivf clinics can work with endo. Also second what PPs have said on removal from ovaries affecting your eggs as I had that on the ovary where they removed my cyst. I remember my gynaecologist in my twenties saying it might affect my future fertility but who worries about that at 24?!

I would pay to see a consultant privately just for a chat about it. That should help guide you. FWIW, I was told they would reconsider doing a lap removal of more endo if ivf didn’t work.

So I had quite different advice from previous posters. I really hope it works out for you!

Thank you for this the problem is waiting to see a consultant as time isn't on my side I'm going to ring secretary tomorrow and see what they say as I'm starting to panic and reading different points of view is making me question what to do as my GP has been next to no help