Stage 4 endo and trying for a baby

[Amy2106]

Just looking to see if anyone has been in a similar situation / look for some advise!

I had surgery end of June where they found stage 4 endo, I had x2 large cysts in both ovaries and everything was fused together. My right side is blocked when he did the dye test. I was started on Decapytyl for 3 months and I have been rescanned and my cysts haven’t grown back.

We are planning on trying for children but my consultant has advised my partner needs to have a sperm test before stopping my Decaptyl. I assume as if this comes back abnormal we will likely need help and to avoid my endo getting any worse if we know there a problem with both of us.

GP has been very unhelpful this morning not really listening. He has referred to fertility although this wasn’t what we were asking for.. Is it only fertility that can refer for sperm analysis?

My consultant secretary is on annual leave till later in the week so can’t chase the clinic letter. Just wondered if anyone has been in a similar situation!

Also unsure if they were planning on discharging me from gynea. I am not under a specialist centre although I’m not sure I should be if I have stage 4?

Thank you!

[Behind_Hazel_Eyes]

Hi Amy2106, I am also stage 4 and trying for a baby. Just a bit of background, my last (and first!) lap was 6 years ago. My husband got his sperm analysis done through his GP. It was easy enough to get, though we are based in NI! I had a hysterosalpingogram done in February which showed both my tubes are patent but adnormal, BUT my ovaries are stuck together (kissing ovaries) and I have a 4cm cyst on one of them. We have been trying for the last 6 years. If you are being moved over to fertility, you need to make sure you are in the right weight range or they will discharge you. This happened to us last year... it was devastating but my own fault as I was very overweight.... something I am addressing now through very healthy eating and exercise. I am hoping to go private for IVF next year once I am the right BMI, unless something happens before that! 🤞 Trying for a baby can be really demoralising, especially when trying to navigate the health system. Stay positive and do not give up hope. Hopefully one of the other girls on this forum can advise more.

[Amy2106 in reply to Behind_Hazel_Eyes]

Hey, thank you for your reply!

I did think the GP should be able to request it he was just being very unhelpful! I think we might just do it privately to save the hassle, time and stress!

I have been working with a nutritionist since my operation/diagnosis and have luckily lost around 8kg since this through diet and ALOT of supplements!! So hopefully I will be able to maintain although the joys of being on hormones at present my body might have a different idea when I stop these!

Yes trying to navigate a very broken healthcare system definitely adds unnecessary stress. Wishing you lots of luck and positive vibes too!

[Endo35 in reply to Amy2106]

Hi Amy,

I'm going to give you a positive spin on this!

When me and my now ex husband wanted a baby our gp was helpful as its honestly the best thing for endometriosis!

I was given tablets to help me ovulate ( be prepared for a multiple pregnancy if you go this route)

I did have 3 early term miscarriages 😢 however after looking into a proper diet and taking a conception vitamin tablet along side the prescribed medication I had a successful pregnancy.

My daughter is now 16 and the most amazing precious thing in the world.

Do not over analyse getting pregnant don't put pressure on yourself to do (it) all the time. You have to relax as the more pressure and stress you put on yourself and your partner the longer it will take.

It took me 8 months to fall pregnant and for it to be successful, I know how hard it can be not to stress, but stress will be the worst thing foe you and your body.

I hope this helps

[Rol81]

Re: Spetm analysis, your gp can refer you . Ours did (uk) but it was a few months wait . Or they ask if you want to “self fund” , this was within 5 days!!! It’s around £120-£150 private, I would just go private if you can .

Good luck x