Endometriosis when trying for a baby! - Endometriosis UK

Endometriosis UK

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Endometriosis when trying for a baby!

HR270113BL11 profile image

Hi everyone, this is my first post and I’m new to this opening up to people. I’ve now got to a point where I feel so alone that I don’t know what else todo.

My story feels like it goes on forever & that I will bore people so I do apologise. Anyway I’m writing today as I just don’t know what todo anymore or how to cope me and my husband have been trying for a baby for the last 3 years and nothing! I was given clomid to try but after my first cycle I was taken into hospital with very sharp pain to find I had an ovarian cyst.

The cyst was only 2cm so I couldn’t have an operation until it grew to 5cm so for 8 months I suffered with pain every day and felt like I was living on pain killers until I eventually had it removed. When I had the cyst removed the hospital gave me hope that within 12 months I should be able to fall pregnant but nope it’s been another 12 months of hell been in and out of hospital.

I finally got answers to why I was in so much pain all the time and why I wasn’t getting pregnant I was diagnosed with endometriosis and was given an option to go on the pill and then have my cells burnt off? Or have an injection but It would cause me to go through the menapause. I generally just don’t know what todo anymore how can I be happy on the pill when i so badly want a family but then how am I meant to accept it may never happen? I feel like I can’t speak with my husband or friends as they don’t understand. I know theirs plenty more people that are in same boat as me and this is the reason for my post I need to speak with someone who understands what it’s like as I’m tired and drained of feeling so alone.

11 Replies

Hi sorry to hear your going through this. I have a similar situation, i new i had endo me and my partner were talking about trying for a baby but my endo got really bad and ended up in hospital having emergency surgery to remove 2 large cysts and endo around my abdomen, was then told it is best to have the injections so am now in a menopausal state and they cant give me any clear answers to if it will effect my fertility or not and also had a check up 5 weeks post lap and the cysts had grown back whilst on the injections which shouldnt of happened so i no what your going through with wanting to start a family and not knowing where you stand with it all

Hi thanks for replying.

I had my cyst removed and within months it was back again it just feels like you go round in circles and get no support.

I’m 25 and thought I would have the rest of my life to have children.

I really hope things work out for you

Yeah i thought that as well i have a appointment with a endo specialist next week hopefully get some answers as like you i am only 26 and thought i would have time to have a baby

I hope everything goes okay in your appointment for you

Hi HR270113BL11,

Welcome to the forum and I'm very sorry to hear you are feeling so alone.

I'm not sure how you were diagnosed or who spoke to you about treatments but perhaps it is worth asking for a second opinion?

The National Institute for Health and Care Excellence (NICE) guidelines for the management and diagnosis of Endometriosis state that medical professionals should advise you on treatments "according to the woman's symptoms, preferences and priorities, rather than the stage of the endometriosis." There is a section for if "fertility is a priority" where it says "do not offer hormonal treatment to women with endometriosis who want to conceive."

There may be of course, a valid reason they have offered you the treatments that they have, but if this is the case, it should have been explained to you clearly.

You can find the guidelines here:

nice.org.uk/guidance/ng73/r...

If you feel you need someone to talk to, Endometriosis UK do have a free confidential helpline which is run by volunteers, all of whom have experience in the condition.

You can find the opening times here:

endometriosis-uk.org/helpline

We also have support groups if you feel like meeting people face-to-face. You can see if there is one near you here:

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

I hope this helps and you are definitely not alone!

Take care and keep in touch.

RicEndoUK

Volunteer Moderator

Hi ric

I was given the pill to take for 3 months to help to pain as the pain is really bad and no pain killers take it away. After 3 months I’m then having my second operation and then they will help with fertility but they can’t promise anything will work so that’s the hardest part.

I have also found a group and will be attending as I would like to speak with other people as my doctors aren’t that helpful and just expect me to deal with everything and be strong.

Thank you for the support

Hey, my experience is similar we’ve been trying for almost 2 years but last summer I ended up in hospital with a ruptured endometrioma - didn’t know I had endometriosis before then. At the same time we got a referral to the fertility service and we are now waiting to start ivf. A previous consultant suggested I had the injection before starting but I didn’t want this so haven’t had it. I know it feels like you are on your own but this forum is full of women who understand. The fertility network forum is also really helpful if you arent already a member. Hopefully if you can get a referral to the fertility service they can help you look at options to help you have a baby, I know how frustrating it is just waiting and trying without results but I felt better once I was being seen by the fertility service rather than general gynaecology. Thinking of you, feel free to message if you want to chat xxx

Hey I just want to give u a little hope- I was diagnosed with severe endo 2015 and had a laparoscopy to remove what they could- I had cysts on both ovaries as well as endo on my bowel. It took us almost 3 yrs and a failed round of ivf to finally conceive our baby naturally after that so it can happen. I conceived while having an 8cm cyst on my right ovary...

Also I would recommend being referred to a bsge centre who specialise in endo and treatment rather than general x

I had a similar experience. MC, endo diagnosis, surgery, 4 months of menopause inducing hormones so the ovary could heal, 6 months TTC and finally ivf. During this time the endometriomas had grown back but my ivf doctor was not concerned about them as long as he could proceed with the egg collection there’s no issues. We got lucky and got pregnant in our first transfer.

My advice is that you speak to a fertility specialist if this is your priority and also tell your endo specialist that is priority number 1. some women with endo fall pregnant naturally specially after surgery, some even without surgery and for others ivf is a great help. So there are definitely options for you, you’re not alone!!

Thank you everyone

Hello I totally understand your frustration I’ve been longing for a baby and got close to having one with endo and lost it at 12 .5 week so it is possible to get pregnant.have you been offered a lap to help conceive?ive been put on the pill and it infuriates me when I so want a baby when I first took it I was so lazy about it but now I don’t think it’s helping my endo I don’t know what docs will do as they don’t seem too helpful so I’m going for a second opinion who specialises in endo and fertility!ive heard if you find the best specialist they can usually excise a fair bit of the disease to help the pregnancy

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