Endometriosis UK

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Endometriosis, & wanting a baby

PkxTam•

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So I'm 31 years old, been with my partner for 9 years, we miscarried in 2014, and been trying ever since,

I always thought it would happen when it happens,

Periods I always thought were painful and exhausting, which I thought was normal for every female...

So I just stuck it out, trying to concieve and just dealing with the pain monthly,

June 2021 I bit the bullet and finally spoke with my GP because i knew this wasn't right, excruciating pain each month, and still not concieved since 2014

So after examination the doc said she could see something on my cervix and she will refer me, I go see a consultant a few weeks later and he tells me I have endometriosis which he thinks I've had for many years, and that after trying to concieve for 12 months I should of been in contact with the fertility clinic this saddens me, because I held back with faith it would happen,

He told me I would need surgery- laparoscopy, which I am still waiting for now,

An the consultant sent my partner for a semen analysis which we are still waiting for the results now, it's been well over a month

And I also had a ultrasound last week which my consultant sent me for and I recieved a text message from my gp with results to say I have bilateral ovarian cysts and he will refer me to gynaecology

And that is it, no answers no nothing I feel very alone, my mind does not know how to process all the unknown

Will I ever be a mum, will I get answers instead of just you need this surgery and that's that,

I read on here how people know the ins n out, the professionals I see, don't seem to explain anything, I'm left hanging, an left researching myself, my mind is in overdrive, an it is literally all I think about, time isn't on my side and I'm scared they'll do the surgery and it's going to be worse than we've originally thought

I just feel so sad with it all

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PkxTam

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Hi sorry your going through this it can be awfully stressful & confusing when the medical professionals tell you the diagnosis but leave you with that & not much information. Don’t beat yourself up about thinking getting pregnant naturally again would “just happen” it takes courage to admit you may need to seek medical help & then going about it , this happened to me I’d always just thought when we were ready to try for a baby I’d come off the pill & it wound just happen ( like it does for so many ) I finally realised we may need help after 3 years of ttc unsuccessfully & then so it began.

I was diagnosed with endometriosis never knowing I’d had it never having had any of the classic symptoms, I have endo cysts.

I had a laparoscopy in 2019 when it was officially diagnosed & cyst drained

Because I was going to have ivf treatment they did not remove any of the lesions that were found incase it affected my egg reserve.

Once you are referred to gynaecologist they will have more insight in to what’s going on & if you have to have the laparoscopy before being referred for fertility treatment.

Loads of people have gone on to have pregnancies & healthy babies with endometriosis & having under gone ivf , your still young too which helps.

Hopefully you get some appointments through soon for the next steps xx

Hi, thank you for your reply, It is all fresh to me, like i said it was only last year I saw a consultant, an im still learning everything what words mean when they are shortened, (some groups have all these initials that mean things) An im still getting to know it all, an what it means, to track everything, as well as trying to understand endo,

I have already been referred to fertility, myself and my partner, it's just time isn't it, it takes months for one appointment just for a talk, without scans an other tests, I do hope I get this laprascopy surgery soon thou, so I can start looking up, time just seems to fly past me an i feel I'm getting older and I'm scared they'll tell me in the end there's nothing else they can do, an I won't become a mommy

I mean my mind is my worst enemy tbh, positive thinking is the way forward but it just knocks you back when it is all the time,

Have you started your ivf journey yet if you don't mind me asking?

Yes there is so much to it & hard to understand , your absolutely right it is time & medically everything always takes forever , especially after the pandemic with all the delays. I hope you don’t have to wait to long for whatever comes next in your treatment. Great news that you have been referred for fertility treatment, once your accepted they are usually pretty good & will offer more information. Time seems to go by quickly & can also feel like an eternity whilst waiting for the appointments & surgery dates. Yes I’ve started my ivf back in 2020, mines a long & heartbreaking story, but the positive to come out of it is that I became pregnant on my 1st ever transfer , had a healthy pregnancy ( but unfortunately lost my baby due to other complications nothing to do with endometriosis or ivf )

I’m now in the stages of having to go through ivf treatment again for a second chance.

Don’t be put off by any of this, I’ve heard of so many endometriosis sufferers who have gone on to have babies.

You said you suffered a miscarriage I’m so sorry to hear this , it makes the journey even more difficult.

Where there is a chance there is always hope!

Also worth mentioning the fertility network on here is a great source for information & support to learn more about fertility treatments & many women on there have had healthy babies after loss , endometriosis & treatments x

Oh I'm soo sorry to read this I hope this second chance really comes through for you ❤ I hope and pray it all goes to plan for you ❤You are so strong and positive, it will come good for you, your an inspiration to us females to be honest, thank you for your replies and the reassurances, and thank you for sharing part of your journey with me, I hope to be seeing good news on here from you in time

There is always hope and thank you for reminding me of this! ❤

An i shall look on here at the fertility support and information, hopefully I'll get abit of an idea of what to ask when I see my consultant and the fertility clinic,

Maybe you could let me know how your getting on, in your journey, I have followed you on here but I'm not too familiar with it all like Facebook and Instagram lol xxx

Thank you for your kind words 💗It’s good to know we are not alone & there are others going through similar experiences & to have insight first hand from them rather than the medical jargon & dr Google . I joined these forums back when I was in treatment in 2020 & it has been a life line. Especially when family & friends around us have no clue how we really feel when ttc for years & facing people around us falling pregnant without trying. So many emotions that go in to this & it helps sometimes just to get it all out on here just with others who may understand.

Yes il keep you informed on my journey thanks !

If you need any help in the meantime feel free to message me anytime xx

❤Yes you hit the nail on the head with that, I agree ❤And yes please do let me/us know how your getting on,

By all means send a message too or insta ... shez_royal_90

I wish you the very best on your journey❤ xxx

Hi.I’m so sorry you’re going through this.

I was in a similar situation a few years ago and before having any surgery I went to a fertility clinic for an assessment to get an idea of what my options were.

Please don’t think that having endo and cysts means you won’t ever be a mum. I know it’s hard but try and take everything on step at a time and don’t put any pressure on yourself!

Hi, thank you you your reply :)You are right, I try to remain positive but sometimes it just drags you down especially when it feels constant :/ I havent been to the fertility clinic as yet, only scans, internals, ultrasounds etc, my partner has been for a sperm count but that is it as yet, I'm awaiting to see a consultant again for the endometriosis so I shall be asking if I will be having apps with the fertility clinic to even know what my options are, it's horrible assuming an thinking what could be isn't it xx

It’s such a horrible and scary time.Before you see your consultant write down all the questions you have for them-I find myself so overwhelmed at appointments with my consultant I forget all of what I wanted to ask.

My counsellor suggested I keep a diary for all things endo and fertility related so I can get everything out of my system at the end of each day,it’s not for everyone but it’s helped me.

Yes, i read here that keeping a diary would help, so I have gone bk n wrote from my first appointment with consultant an scans etc,Do you mean you write daily about how you feel and symptoms?

An the thing is I sit down to write some questions down but when I read back, I feel like silly I don't know why.. prob cause there basic questions... I haven't done this before it's all new

But you are right I come out of appointments and I can't remember half of the professional words they use, then I'm trying to think so I can research what it meant etc

Councilling because something I need to look into

Thank you for your reply xx

I use the diary for all sorts. Symptoms,if I’m feeling fed up and overwhelmed with it all-it’s just a way to get whatever you’re feeling off your chest each day so that you don’t get so consumed by it all.

Aw,I thought that the first time I did it but no question is silly. It’s so important that you understand everything so you can decide on the next steps. x

Yeah I think I will try this, it maybe better than trying to offload how I feel to my partner, (sometimes it feels like he shrugs me off or ignores me cause its all I ever bloody talk about) so I feel this may help, Your right I think I will start a lost of questions too

Thank you again 😘 xxx

I really feel for you and hope now you are ‘in the system’ you will get the support and treatment you need.

I didn’t want to read and run as we were in a similar situation (stage 4 endo with cysts), on waiting list for IVF. It was such a sad and stressful time that I accessed counselling which helped me. We did however fall pregnant after a laparoscopy and I still can’t believe it happened for us.

Please do not give up hope and I hope you see the consultant soon.

Hi, thank you for your reply, I happy to hear you fell pregnant without ivf, there is sooo much to read, an tbh sometimes it's worse reading an reading but I read looking for reassurance, because I feel like I'm battling this myself in my own head, my partner doesn't understand how stressed I am, an how it is all I think about, an to add to it I've gained weight, which isn't good if they call for me for the laprascopy, it's just a challenging time that seems to be going on forever an I deal time isn't on my side at allBut you have given me a little hope thank you, 😊 xxx

Hey, your post really got to me cos I’m in a v similar situation. I got diagnosed with cysts in 2020 which I’ve had drained, and they found I had adenomyosis when they were in there. I only found this out from the surgical report, the surgeon didn’t bother to tell me, explain what it was or what I could do about it. I got so upset because I was already worried the endo alone would affect my chances of pregnancy. Then not long after we started trying fora baby I started getting monthly lung collapses and they discovered I have thoracic endo too! So each month has been a race to get pregnant to stop the lung collapsing and to stop the period pain. After 7 months of it though I had to go for surgery on my lung. The surgeon was great but the entire time I’ve not had any endo support to talk me through how to manage it and where to go from here. My partner is getting a fertility test in the meantime which we’re still waiting for and then I guess it’s down the ivf route which I really hoped I wouldn’t need but I’m not sure what other options there are. I completely get you’re feeling alone with it - I am too. It’s hard finding people close to you that really understand what we go through. I’m 35 and I’m literally the only one out of my mates that doesn’t have a baby. I know it’s not a race but it can feel v isolating as you don’t share those common experiences with them.

Happy to chat more about it if you’d like to off group chat just know that you’re not alone as everyone here knows what you’re going through. I’ve found counselling really helps too. X

Hi, thank you soo much for your reply, I feel for you that now you maybe forced to go down the ivf route :/ and waiting around just seems longer doesn't it, waiting for tests like your partner, we're still waiting for results for my partner an it was long ago 🙄 and ditto about having all your friends with babies, same here and my siblings all have children too, I mean it's the best thing being an aunt but being a mom is something else that nothing will compare to, An thank you, im glad I came here to seek some support from other similar to my own situation, your right having people close who understand is very slim, it can be quite isolating, my own partner doesn't get it sometimes the daily agony sort of thing,

So I'm grateful to be here with you lovely ladies,

And yes it would be good to have someone to chat to Facebook? Instagram? Xx

Ugh there’s so much waiting!! I’ve got 7 nieces and nephews so again in a similar boat! They’re great but I hope they remember how much childcare I’ve provided if I ever get a baby of my own 😂 so true re partner, he is supportive but will never fully understand. He hurt his knee the other day and it’s like the world has imploded 🤦‍♀️ Let’s do insta, my account is @elecorc

🤣🤣🤣 yeah that sounds as bad as if they get a sniffle and man flu kicks in it's the end of the world 🤣 they wouldn't know what to do in the mind of a female for a day! I'm right behind you with 6 nephews and nieces and I agree with the childcare too! Lol I'll add you now on insta xx

Hi Tam, you are not alone. I’ve been struggling with endo (and ovarian cysts,adenomyosis etc) for 20 years now. The more you beating yourself up, the less you achieve. You are now waiting for treatment, so just have faith. Many women out there have children with endometriosis. I know it is hard, but never forget that adoption is an option too if nothing else. I am following on IG two moms who were struggling too and decided to adopt children, and it just happened naturally that they had have their own biological children too. Their IG is doughertydozen and justthebells10. They might give you hope and brighten your days❤️

Hi, thank you for your reply Your words are all correct and I know this, it just drags me down now and again, feels like nothing is happening apart from time ticking on and me getting older, but your right, I'm awaiting appointments so I have something to be positive about,

It is nice to know we're not alone as much as it feels it sometimes, thank you ❤

Thank you for the IG names I've followed them now xx

I enjoy those accounts and I hope it will help you mentally❤️❤️I am myself don’t want children, it took me years to realize that the amount of pain I am in (I have other secondary conditions such as a disc slippage) would make it difficult to care for a child. I grew up without a mother, she died of ovarian cancer when I was a child and I want my child to be taken care of. Although if they can fix some part of my back I’d might consider having or adopting one. I wish you all the best and just know whatever happens it meant to happen that way❤️ We have community in FB as well Endometriosis support groups. You are not alone💕

Thank you for your words ❤ and thank you for recommending a few accounts, I hope they do help myself thank you, and that was a tough decision for you, I'm sorry to hear about your mother I hope there is some treatment to help with your back?I suffer with my back I have for years, my sciatic nerve the main S1 nerve it's a bloody nightmare, one min they wanna operate an then the next they don't wanna do anything on my back it should be a last resort 🤷‍♀️ and now they wanna focus on the nerve in my left side an maybe inject the nerve 😳

So I feel you to a degree, 🫂

What is the Facebook group? Please thank you again 😘 xxx

Sorry to hear. I have completed 2 years of physiotherapy and they opted me out saying they cannot do anything for me. I am waiting for orthopedist for long time now. They can give you steroid injection for the pain. Might help. Worth a try. I have bilateral L5 pars defect, 2/3 degree spondylolisthesis and end plate sclerosis. Also osteopenia. And knee arthritis 😅 this is all due to hormone problems for my whole life. I am no longer fully independent which drives me crazy. You’ll find groups like Endometriosis UK, living with endometriosis, endometriosis support group UK,etc. x

Awwww I'm sorry to hear you have to live with all of this, it must be challenging and yes I can imagine it drives you crazy now not being fully independent ❤ you have to keep pushing these professionals, see where your at witj the process, and when you will finally get to see the orthopedic specialistThank you, I have found a few like endometriosis support xx

Hi PkxTamI feel your pain, you will concieve and have your babies. May be it is taking so long so you can enjoy them when they come. I had similar experience (and still have!). I have 2 boys now (12 & 8) hoping to have a girl soon! It takes a while for people like us but it will come eventually. Keep the faith 🙏

Hi thank you for your reply ❤I do hope that is the case, so we can enjoy these little beauties when they do finally come along, I hope ❤

We just have to push on, an keep positive it'll come, good things come to those who wait... 😊 it will be worth it for both of us, you need a girl in your household your outnumbered lol ❤ 🙏 thank you 😘

It's just reassuring knowing there's people like yourselves to chat to, to reassure, I'm so grateful for you all xx

Just chiming in here with all this encouragement. So much love for this community. You’re not alone & heart is with you - it’s such a huge amount of information & emotion to process. Diagnosis knocked me for six & sent me spiralling into so much unknown. Please know that there is hope. I underwent surgery for stage 4 with large complex endometrioma, endo of ureters, bowel & cervical/rectal involvement. This news came amidst our TTC journey & following a miscarriage, like you, I’d been dealing with pain & quite a bit of medical dismissal over the years handling “normal period pain”. Well done for getting that fertility referral in & don’t be shy to nudge, call, enquire as to where you are along the process. I politely badgered quite a lot & often got a quicker response. I was personally recommended to have surgery prior to IVF due to my ovaries being in a risky state & egg retrieval odds being so low. I underwent NHS excision surgery via lap back in Nov21 (6 hour Op!) & was already lined up with IVF team to undergo a cycle following sufficient recovery. I’d lost hope in natural conception long ago - but we never needed that IVF intervention.. We fell pregnant naturally 9 weeks after surgery & will be meeting our babe in a few months! It’s such a hard subject to navigate & Endo has no rhyme or reason - but honestly even the absolute STATE of my insides were not beyond hope. I really hope this might encourage. XX

Hi, thank you soo much for your reply, for those encouraging words and for sharing part of your journey with me/us, it's reassuring knowing these words, and I hope one day after the surgery it will all happen naturally just like you,I'm soo happy that you'll be holding your baby in a few months, my hearts full for you, you ended that message on a nice high I love that!

And thank you, your right ❤

I do need 'nudge them' I need to find abit of confidence in myself with it all, I mean I know its my body, but their the professionals an sometimes they have a way with dismissing you once they've told you what they want to say sort of thing, but I shall, an I also started a book so when I do see these professionals I'm ready witj some questions lol, I'm picking up good ideas here n there n thinking yep I'll try that

Thank you soo much, and let us know how you get on with your bundle of joy ❤❤❤ xxx

Chasing & asking more more detailed answers to questions didn’t come easily for me - took nearly 8 years to build up the courage to really start kicking up about the horrific physical & mental effects living with a chronic illness was having on my life. Writing down questions prior to any conversation is a really helpful thing to do & Ive found this helpful every step of the way. I also ended up recording quite a few conversations with consultants to help me remember all of the info & relay this to my other half when he couldn’t be there during covid. Keep going & surround yourself with people who can support you. Endo alone takes a huge toll on us - let alone trying for a family & all of the deeper feelings that come with this. Surgery isn’t always the best option for fertility but for me I’m certain it enabled conception to finally happen - it did feel like I had to hand over our odds to the professionals at that point - but it was absolutely worth it. You’re not alone love & always here to chat. XXX

Thank you soo much for your advice, it's very much appreciated, and I'm hoping surgery enables conception for us too ❤ xx

It’s hard to provide proper answers until after your surgery but during the surgery they will try their best to improve your fertility for you and will also explain what is going on I didn’t have proper answers until after my surgery x

Thank you so much for your reply, I hope that is the case Are we within our rights to request the documentation after surgery? To reflect back on instead of remembering everything that was said? Xx

Yeah of course you have the rights for any documents about yourself. I got asked if I wanted the documents sent to me as well as being sent to my GP And I said yes so I’m sure you’d be able to ask xx

Oh great I didn't know that, I'll be sure to ask thank you xxx

Hello, I am sorry to hear what you are going through. I have always dreamt of being a mum, and although I am not trying to conceive, when I heard I had an 8cm cyst few months ago and that would impact my fertility, I thought I would faint.

here are thoughts for you as i spent tons of time benchmarking surgeries that would minimize the impact on my fertility 1) first things first, your health comes first and before pregnancy. try to solve each thing at a time, step by step. obsessing over fertility when i had the diagnosis impact my morale big time

2) remind yourself that it only takes one healthy egg to make a baby

3) laparascopy has good and bad impact on fertility:

good impact: it kind of cleans your uterus from all the lesions, so actually a lot of women fall pregnant shortly after laparascopy

bad impact: when removing ovarian cysts through excision, they necessarily remove healthy ovarian tissue which then decreases your ovarian reserve (have you tested for your AMH?)

Given I wanted to do egg freezing post surgery, I benchmarked the best possible ways to minimize the impact on my ovarian reserve which was not great when I tested for it, there are three options:

- Option 1: going for classic cyst excision laparascopy which could reduce your ovarian reserve (that you cannot get back)

- Option 2: Drain the cyst, go through IVF (in my case was egg freezing) and then excise the cyst --> draining the cyst doesnt reduce the ovarian reserve; however draining cysts means that high probability cyst comes back in the next few months

- Option 3: ethanol sclerotherapy... that's a novel method of removing cysts which doesnt excise them but injects them with alcohol. it reduces your ovarian reserve but much less than the normal excision. that's what I went for last month but I had to do it in France as only one surgeon in the UK practices it. I am planning my egg freezing in a few months time

Given your situation, I think 1) go immediately see a fertility clinic as they see a lot of people with ovarian cyst and may advise you whether to do first excision or start with IVF; 2) ooption 2 that I laid out may be the best for you

My general feeling was that some surgeon really pushed hard to just go through surgery without caring much about my fertility, the only one who did was the one in France (I saw 3 surgeons in UK/London, 2 of which recommended option 2 and a horrible one who recommended option 1 without even mentioning fertility)

all the best and let me know if you haev questions. You will be a mom one day !!

Hi, wow thank you for all that info and advice it is greatly appreciated ♡ I havent tested for AMH? What is that,

I found out I had endometriosis and that surgeon referred me and my partner to fertility, I had a phone call with a consultant that wanted to do this surgery that I'm having this month the laprascopy, but minimal information, completely nothing about fertility about that we had been trying for a baby for 9 years and he wants to do this surgery nothing about egg reserves, I didn't know nothing until this site..

and he said that he would send my partner for a sperm analysis.. its taken 6 months for his test and for this surgery, I haven't seen anyone face to face for fertility or endo apart from the 1st time I was examined by a gynaecologist who said I have endo an would refer me to fertility

I havent seen anyone face to face to ask these questions, about my fertility or even the endo..

And thank you again xxx

Tam, it sounds like you need to look into other endometriosis specialists and fertility clinics. These are two different things. Make sure your endo surgeon is an endo specialist (ie not only does he operate on endo, he ONLY does endo ..!! you dont want someone experimenting on you) I am EXTREMELY surprised you werent asked to do an AMH test, this is the super basics when it comes to assessing yoru fertility because as it's a simple blood test which serves as a proxy for how many eggs you've got left.

My advice would be

1) look for other endo specialists, there are many of those in London, I have even seen one in Cambridge

2) ask around the options I have laid out to you so he doesnt push you for an excision without mentioning your fertility

3) go see separately a fertility clinic, they will run all the necessary tests on you and your partner

Vouch for yourself and do tons of research. One thing that I have learnt going through endo these few months is to take control by being knowledgeable. If you want to understand more about fertility, I recommend a book called "It starts with the egg" which helped me understand a lot around egg fertility

all the best Tam and keep me updated if you want !

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