New possible endo + infertile

[Abz81]

Hi all

First time posting. My diagnosis still not 100% confirmed, even after laparoscopy gynae can’t seem to agree.

I have just finished 6 months of Decapeptyl, which did help a bit with the pain etc…. Well for the last couple months it did

I’m now feeling really down, have a sinking feeling that matter time before all my symptoms come back.

I am single and don’t have anyone to talk to about this

To top it all off spoken to fertility recently looks like I won’t be able to have children

Sometimes I am accepting of this and other times I feel really down about it

Is anyone else feel like this ? Would be good to speak to someone going through something similar

[AllthatGlitters]

Hi Abz81 I am on decepeptyl injections (5months this into them). What is the plan with your GP since you have had 6 months? Mine is a hysterectomy and I am on the injections until I get surgery. In this current climate who knows when that may be.

I have endo and adeno. It very slim I could have children so I decided I am not going to even bother, as high risk for miscarriage etc …. Due to how bad my symptoms are.

As you have nobody to talk you, you will get lots of support on here and feel free to PM me if you need a chat. Also maybe counselling or CBT would help.

I have had CBT and it’s allowed me to think differently about things. Yes I relapse and go Into the negative but that is what the mind seems trained to do x

[Abz81 in reply to AllthatGlitters]

Hi thanks for the reply. It helps a bit reading stories on here… guess it knowing people are going through the same or similar as me

So far the plan is to stop decapeptyl for just now for at least a couple of months …. See what happens then GP will get advice from gynae

[Haneliz22]

Hiya,I’m in a similar position to you at the moment. I tried Zoladex for 6 months in 2018 which really helped with my pain actually. Fast forward to now, I’ve just had my first laparoscopy on the NHS exactly a week ago and it found nothing at all and no endometriosis!

I have a partner and haven’t been actively trying but have not once been on birth control throughout the past 7 years and haven’t once had any ‘accidents’ which makes me seriously question fertility!

Happy to talk to you lovely as I can appreciate how awful it can be with no one to talk to.

Thanks

Hannah x

[Abz81 in reply to Haneliz22]

Hi thank you for the reply. So I guess pain and symptoms came back for you after stopping the zoladex?

Now having spoken to fertility people I’m considering going for hysterectomy but I just don’t know

How you getting on after you laparoscopy? And being told no endo? I know that hit me hard, which I know sounded strange to anyone I talked to or tried to talk to

Fi x

[Gardenist]

Hello I just wanted to reach out and say that I've been where you are and it can feel very lonely, even with a partner. Give yourself lots of grace it's really like a grieving process of what could have been and it takes time to process all of that. I would find myself crying in the supermarket on seeing a family and feeling very angry at life at times. Looking back I would have benefitted from seeing a professional to help deal with my feelings but that wasn't something I realised at the time.

Having said that I now have 2 biological children (12 & 9) conceived naturally so it just goes to show that with Stage IV endo and being told 'you are unlikely to be able to have children' was not true in my case. I've had a hysterectomy now and was better but not fixed and now worse again. And so I am glad I chose to hope and tried to hold on to my fertility in my 20s despite the pain. Every person is different though and you have to think about what is right for you.

I wish you well in your journey x

[keepfaith1982]

Hi Abz81 im so sorry to hear your going through this it can be such a lonely place and you do feel on your own as people dont understand how it feels to have endo and to be told news of infertility is devastating. When I joined here I soon realised I wasnt alone so many ladies going through their own fertility issues and I didn’t feel like the only one. Can I ask why they said you are infertile? Considering they haven’t decided if its endometriosis? I myself have this horrible condition have they ruled out ivf ? The nhs did for me went for a private scan and said they could try natural modified ivf x

[Abz81 in reply to keepfaith1982]

Hi yeah I have blocked swollen tubes. One if my ovaries has scarring so tightly wrapped around it. My age and weight rule me out of IVF on NHS.

But wit all gynae problems have had they don’t think I would be producing enough / good enough eggs for it to be a success

Then there’s the fact that I’m single, so if I was going to consider IVF private would definitely need a sperm donor and most likely an egg donor.

Not to mention I’m not really in a financial position where I could afford to go private

Basically I’m starting on journey of accepting it wasn’t ment to be for me, as devastating as that can be at times.

I am a believer in what’s for you won’t go by you. I just have to keep telling myself that. Who knows I might adopt

[LeahEndoUK Moderator]

Hi Abz,

If you feel that you would like some more support and others to talk to who are going through a similar experience, EndoUK run local support groups. These are run by volunteers and provide a support community. I have linked below EndoUKs page for local support groups so you can find one that is closest to you.

endometriosis-uk.org/find-a...

I hope you find this useful.

Best wishes,

Leah

EndoUK