Dealing with my diagnosis.: Hey guys, I'm... - Endometriosis UK

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Dealing with my diagnosis.

HannahJayne profile image
HannahJayne

Hey guys,

I'm new to this. I was diagnosed with endo in April having had 5 miscarriages, dealing with extreme pain from my periods and being wrongly diagnosed with IBS.

If I'm honest, I was so glad to finally have a diagnosis but recently I'm finding it really hard.

I can deal with the pain, to an extent.. There's lots of pain killers and I'm slowly finding little ways to comfort myself when I'm hurting however the thought of not having a baby is breaking my heart.

I haven't got any friends really and I'm struggling to come to terms with things. Does anyone have any advice? Does it get easier? Is there hope, will I have a baby one day? x

21 Replies

Hi 👋🏻

I’ve been trying for a baby since August 2013 and still no luck 🙄 diagnosed with endo in September after me changing consultants because the first one was useless to be honest! Now they know I have endo in my uterus and bowel so waiting to see what the next stage is, almost every day I’m hurting, pain killers help like you said to a certain extent but nothing helps mentally. That want (almost need) for a baby is so hard to deal with, my job doesn’t help as I am a breast feeding support worker. Like you I was almost happy to have a diagnosis after being fobbed off for so long 😒

Stay strong

Here if you want to chat

Fiona 😘

HannahJayne profile image
HannahJayne in reply to F10NA2

Hi Fiona!

I am so sorry to hear of your heartbreak. I think us girls need to stick together don't we! Every month we have negative tests and see other friends announce their pregnancies. I feel like an awful person, but I just feel angry and upset. I want to be happy for them and deep down I am but I can't help but hurt for me and Tom (my fiancé).

How did your partner cope with your diagnosis? I'm so lucky to have mine but I feel I've let him down.

Chin up, we're all in it together!

Hannah xx

F10NA2 profile image
F10NA2 in reply to HannahJayne

I’m exactly the same, people announce they’re pregnant and I’m like oooo lovely 😒 and like you said I don’t want to sound like a horrible person but it’s just natural to think, why not me?!? Every month I get the endo belly and some people have actually said to me “when are you due” 🙄 and women I visit say things like “how many children do you have” just assuming that because of my job I have children, it hurts like crazy and to know that you’re not the only one that thinks/feels that way makes me feel a little more sane!

My husband (married 14 weeks ago) is amazing, so supportive! I always say to him that I wish he was the fertility issue not me because I feel that I could accept that a little better than I do myself being the issue. I feel so guilty, pathetic and a waste to be honest, i sit looking at him playing with our nephew and i just fill up because he would make a wonderful dad, also my parents (I’m the only child) would make amazing grandparents!

I have nightmares about it all, anything from seeing my husband play with the baby, my parents taking the baby out and even the pregnancy experience, feet sticking out my tummy feeling the movements, then I wake up and think what it this.

I take antidepressants now and see a counsellor regularly because I’ve been so close to the edge with it all.

Hope you’re ok 😘 xx

HannahJayne profile image
HannahJayne in reply to F10NA2

I am so glad I'm not the only one!! I have felt like such a terrible person, I literally dread hearing the words ''we're pregnant'' and I feel so selfish, like come on Han, suck it up you aren't the only one having trouble and I'd like to think people would be happy for us when it's our time. I just can't help it though!!

Congratulations on your wedding!! Hope you had the best day! Everything you've said about your husband and your parents is the same with me (I'm an only child too!!). I can't help but worry that he's thinking ''If I'd met someone else, I'd have a zoo of kids''. Tom is the most amazing person, I know I'm being silly.

I always have dreams about positive pregnancy tests and me going into labour. Silly dreams but I have at least 2 a week!! I almost want to stay asleep sometimes just so it feels real for a little longer, sad really.

Here if you ever need someone, thanks for being so kind xxx

F10NA2 profile image
F10NA2 in reply to HannahJayne

It sucks doesn’t it, I often say to my husband just think you could go out and have a baby with someone else when we have struggled for so long. It’s silly things that just pop into my head that hurt most! The things that people probably aren’t thinking about but stupid me is!! 😒

Maybe someday soon we will have our miracle babies 😘 and it will be worth the wait I’m sure!

I’ve even thought about surrogacy aswell as IVF adoption etc!

Have you thought about other options?

Likewise here if you need or just want to chat 🤗😘

Xxxxx

HannahJayne profile image
HannahJayne in reply to F10NA2

Tom goes mad when I say things like that, he cares so much about me, he hates to hear how much my heart is broken.

The doctors have actually offered us IVF but I said I wanted to wait until we are married as I've heard and can imagine that it's a huge emotional rollercoaster and I don't think we would manage with it this close to the wedding. Lots of family members have been amazing and offered to carry the baby for us but is it silly to say I wouldn't be able to deal with it?

Every Christmas or birthday, every time the baby and family member who had carried him/her were in the same room I'd be worried, do they remember them? Almost worry they'd share a bond I'd never be able to compete with, at least a stranger we won't see them again. So pathetic isn't it. I'd be open to a surrogate but I think I'd have to not know her.

Are you guys thinking of any other options yet? What are you leaning towards?

ps: our miracle babies will come to us, however it happens and we will be the best mommys :) xxxxxxx

F10NA2 profile image
F10NA2 in reply to HannahJayne

Ahh yes I couldn’t know her I would find that a bit too much to deal with!

Well with everything that is going on at the moment we aren’t even close to IVF. My head is all over the place so I don’t actually know what route I’d like to take, they have told me that if I did conceive naturally I wouldn’t be able to carry full term or have natural delivery plus there is a high risk of M/C.

Sometimes life feels so unfair

Xxxx

HannahJayne profile image
HannahJayne in reply to F10NA2

It's so hard isn't it - my heart hurts for you. For all of us!!

See that's what scares me, every time we have fallen pregnant I have been over joyed but now, after having so many m/c I am petrified of something bad happening and so far the worst has happened. It makes me scared to get pregnant again because my body and my mind can't deal with another m/c I don't think.

I feel like if it did happen naturally, I wouldn't enjoy it like other moms would which is so sad for me and people like us because we've had such a tough time.

I remember the last time we got pregnant, this sounds awful, I obviously was so so happy and couldn't wait to meet our baby and loved him/her so much already despite only being a few weeks along but I found myself struggling to get attached, because I knew what was coming and that's so sad.

How have your friends supported you through it? xxxxxx

Hi , so sorry to hear this but I do feel the exact same as you do glad I got my diagnosis but at the same time it’s hard to deal with diagnosis , I was recently diagnosed stage 4 endo i was told mines is pretty much all over abdomen and bowel over ovaries , I have joined my local endo group our meeting is tomorrow night so I’m going to that hoping to find out more on how to deal with it all, I get my mri on Thursday aswell so it’s good the ball is rolling for me , I keep thinking it will all be better once I have my big op that’s all I can think of and hope for , what is your next stage ? Did they refer you to your endo clinic ? I have a specialist which helps aswell as my doctor’s didn’t even know I had my lap or my diagnosis so they weren’t any help to me ... I do find this group chat helps a lot as we’re all going through the same thing and same symptoms I would be lost without this group .. all the best xx

HannahJayne profile image
HannahJayne in reply to LolaLo3

Hi Lola!

So sorry you're going through all this, it's awful isn't it.

To be honest, my doctors are bloody awful and I am in the middle of changing practise as I have recently moved house so I am hoping that I will have more help from my new GP. For now though, I am on mefenamic acid (which is useless) and they have discussed IVF and getting me referred for more tests once my GP is changed. But for now I feel like a bit of a sitting duck which isn't fun. They mentioned getting the coil, but I can't see how that can help me. I'm willing to try anything though!

Good luck with your support group, I will be thinking of you.

Hannah xx

Aww noo, you've been through so much :(

I was diagnosed with endo in November year just gone. I found it hard to deal with initially, over time and asking questions on here I've found it easier to cope with. I had a diagnostic lap with excision of endo and unsticking organs. They found it all over my bladder, uterus and a bit on my bowel, they were all stuck together too. After that my symptoms have improved and are more manageable. I still need another op to remove the bit on my bowel; they couldn't remove that at the same time as they needed a bowel surgeon; as it was the first time they went in they didn't know what they would find so as standard they had my specialist (he did the surgery).

Are you having treatment? The best way of checking everything is a laparoscopy; I'm guessing you've had that for your diagnosis. They can also remove (excise) it that way too and can check all the structures are fine too, take biopsies of anything unusually. It's the best treatment when you're considering having a child as hormones obviously don't work for planning!

You could look at talking to a fertility center and seeing what options there are for you both, once you know if your endo affects your ovaries and any other organs. They'll be able to check things and advise.

I'm not planning but not preventing either so we're just waiting and seeing, also I'm always active so I don't like the idea of being ill with endo with a child; it is known to come back after pregnancy as that just stalls it. My personal view now is things happen for a reason - I'm not religious just spiritual. Whatever our path we must make the most of it, be greatful for what we have including our bodies, our health, the material things and most of all the people around us that care. I get that some women want children, however some can't for whatever reason, if we are one of those we must find comfort in knowing that perhaps at this moment in time that isn't our path. We can hope and wish but don't let that become an obsession, enjoy life, embrace each day, be happy, love those that love you and keep your relationship with your other half about the both of you, you'll need each other emotionally, develop a spiritual happiness - a wellness - a passion for living in the now.

I know it's difficult and may seem all up in the air if you're very literal and down to earth but serious it's that mentality that's helped me cope, helped me to really see and just be here :)

HannahJayne profile image
HannahJayne in reply to luthien

Thank you so much for this, you said some lovely things which have really made me think!! It's nice to hear other peoples take on endo, I think it's going to help me find my own peace with it eventually.

I'm getting married next June and right now it's all that's keeping me going. I just want to enjoy planning our wedding and keep positive about the future, if it hadn't been for my miscarriages, I think I would be more positive but I just don't see me ever being able to give my husband to be a baby and it kills me.

He would be the most amazing Dad, I think I'm hurting for him more than me.

Keep up with your positive attitude, it's amazing and we could all do with a bit more of it. Thank you xx

luthien profile image
luthien in reply to HannahJayne

Aww, good luck for the wedding! we got married last year - just remember plan early and budget - if people offer to help definitely take up the offer - it gets rid of some of the pressure :)

Firstly focus on your new life as a married couple, make your bond stronger. Then together you'll be able to cope with anything life throws at you :) Just think as much as you feel your husband (to be) would be the most amazing father, would he want to sacrifice your health - emotionally and physically for that - he clearly loves you and would want you to focus on yourself first. Have you talked to him about how much you want to give him a child? He may have views of his own and may not realise that's what you're thinking of it all.

I talked to my hubby about feeling like I was a disappointment because what if I could never give him what he wanted, what everyone should want - a family - what if that never happened (not planning at the moment but a future thought) - I got all emotional and opened up about that I felt he should find someone else if that's his ideal because I'm broken. He got so upset over that, because he didn't realise what I wanted to do for him and how I wanted to have our future and what he should deserve, he said he didn't care about any of that as long as we are together and can be close and can talk about anything and that we're always there to support each other, and whatever happens happens, if it doesn't that's fine too because we'll get through it together. So I guess that's why I'm just focussing on enjoying each good moment in life and being grateful for where I am and what I can do, including the person I am whom he loves :)

HannahJayne profile image
HannahJayne in reply to luthien

Thank you!! Congratulations on your wedding. Honestly the stress has been ridiculous but now the Church is booked and the venue sorted, I can relax a little bit.

I've spoken to him about so much of it and every time he is so comforting and loyal and I know how much he loves me and hates that I think some of the things I do sometimes. I am so so lucky to have him. We've been together for over 3 years now and haven't had a holiday together yet, our first holiday will be our honeymoon!! So as much as this will never go away, I'm trying my hardest to just focus on our wedding day and having the best honeymoon ever! I'm not having much luck though, I can't seem to escape my thoughts.

Your husband sounds so lovely, it's brilliant you have such support from him like I do with Tom. I think the key is like you say, focus on enjoying each other and most importantly, keep being honest to each other - keep talking. It's so important isn't it xxx

Ladysparkle profile image
Ladysparkle in reply to luthien

Beatifully said. Words of wisdom. 😇🙂

Hi Hannah. I feel for you and I'm hoping you can manage the pain one day very soon. Have you been to your GP about pain management? Possibly you could go on a strong version of the pill just temporarily so you can get back in tune with your body and feel good in yourself. My friend takes the pill to ease the pain... then get to the doctor's and demand the next step in how to sort the problem out. I have a heating pad for my tummy when it's really painful and I take paracetamol and ibuprofen throughout the day but this is not good for the body or for you. Also, try to keep yourself busy with work, house things, go for a walk, see friends. This pain can really take over your life and for me, it makes me feel very recluse so I have to push through really hard to stop myself from just sitting and crying and it all but when I do, I am thankful for my strength to get up and about. I am having a laparoscopy in 2 weeks. I will be keeping everyone updated with how it goes. This could be the solution for you. Especially as you are trying for a baby. I will be in the next few years and that's why I've pushed really hard to get to where I am but sadly I had to go private because my GP is the worst and only put my problems down as IBS. Push your doctor to give you what you feel you need, you know your body best!!!! The best of luck to you. Xxx

HannahJayne profile image
HannahJayne in reply to Porter85

Thank you!! The pain is just the worst, it makes me so poorly. The only reason I finally went to the doctors was because I was in that much pain I was being sick. It makes me feel as though I have the flu!! I haven't been back as I'm just in the process of changing GP but I'm itching to get something sorted. Because I'm being sick when I'm in pain, I can't keep on top of my pain killers as I don't know if I have sicked them up.

Thank you so much for the wonderful advice!! It's so hard to not let it take over and give in to the pain isn't it. The doctors told me I had IBS also, I was so angry that this had been left not knowing what was wrong for so long!!

Good luck with your laparoscopy!! Please let me know how you get on, I will be thinking of you xxxx

Hi HannahJayne. I was diagnosed with endo in January. I didn't have the normal symptoms of pain. It was found while trying to figure out fertility issues after trying to conceive for more than a year. The fertility specialist sent me to an endo surgeon. My endo surgeon did a laparoscopy and found stage 4 which was excised. He said that now hopefully my 'garden' would be a better environment for a baby. I am now 7 weeks pregnant which was a surprise as we were about to start IVF.

You have been able to get pregnant, but miscarried, so maybe your garden wasn't optimal. There is hope. I have heard from friends who know someone who has had endo, and had surgery to remove it and had kids. So there is a glimmer of hope.

I was afraid we wouldn't be able to have kids and what my husband would do. But he has been really supportive.

Happy wedding planning. You never know what the future holds. Hugs

HannahJayne profile image
HannahJayne in reply to mayk

CONGRATULATIONS!!! I am so happy for you :) it gives me hope that maybe it will happen for me and my husband to be. I can get pregnant as it's happened 5 times, I just need to hang in there.

Please keep in touch with how you get on with your pregnancy!! Do you think you'll have a little boy or girl?

Thank you, big hugs xx

Sorry just had to comment, I am 46 and have been living with it for years. I just wanted to say hang in, I had miscarriages and it took five long years of absolute heartache, Then finally my beautiful boy Cooper who turns 13 this year and then we then we thought we had better try sooner rather than later my second beautiful boy Jack who turns 12 this year, People tell my how crazy to have babies so close in age but they don't know the reason and how lucky I feel, I would dearly love a 3rd but I am very doubtful now, So please, please hang in there!! Kel xx

Hi Kel,

Thank you for replying!! Your message really made me smile, sometimes I can't help but feel like there's no hope. Hearing stories like yours makes me feel like in time it will all be ok.

We have a little box with baby clothes in we brought and people brought us, along with positive pregnancy tests of babies we never met and I just can't wait to bring a happy, healthy baby into the world.

Happy birthday this year to your beautiful boys. Han xxx

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