Feeling lonely and annoyed :(: Hi everyone... - Endometriosis UK

Endometriosis UK

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Feeling lonely and annoyed :(

accio14 profile image
19 Replies

Hi everyone, so been on this group for over a year now but never felt brave enough to write anything but after such a crap day seeing my consultant I thought what the hell!! So just had my 3rd lap in 18 months and all my endo has come back since my last one in August 2015...have been trying to fall pregnant so it's just been able to grow back and more :( now not only on my bowel but now my bladder. It's such a lonely place being upset when no one close understands. I've been given the option of having nine months to fall pregnant and after that to have aggressive surgery, whatever that is exactly I'm not sure! I know how lucky I am to have working fallopian tubes and unaffected ovaries but im devastated. Told the bestie who said "it's not that bad" when it was suspected scar tissue causing pain not the whole ruddy lot back and more! Even my husband the rock was gobsmacked! It's so tiring to have daily pain and not take any painkillers cos I wanna/need to get pregnant! Sorry for my rant but even writing this has really helped. Lots of love to u all battling this bastard evil condition xx

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accio14
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accio14 profile image
accio14

I apologise as it's tagged domestic violence, I thought I'd untagged it. X

Brottonbabe profile image
Brottonbabe

Morning,

You sound like you're in a really tough place and one I was in. I have endo on the bladder and bowels and endometrioma cysts on both ovaries. They returned after surgery but I chose to do nothing and keep trying to conceive. My husband and I were at the point of giving up. We focused on getting married and moved house then I found out I was pregnant after years of trying and miscarriages. It's easy to say now but switching off and focusing on other things really helped me as if got to obsession point. It's very difficult to do though.

With regards to friends, some people can be really insensitive and they don't understand unless they have it. I'm lucky to have supportive friends but still went through difficulties myself when it seemed everyone else got pregnant at the time I wanted to and miscarried. What I'd say is that you find out who your friends are very quickly and I'd suggest not confiding in those who don't give you the support you need. This forum is great but you'll also need someone to chat to personally. It's a tough slog and if people don't want to stay with you through it then dump them. Sounds harsh but why carry others, you have enough on your plate.

When ttc I still used a hot water bottle and paracetamol. Occasionally I had to use tramadol to sleep and codeine but I did try and keep it all to a minimum. Healthy body healthy mind etc so some people on here have had great success with eating specific things and avoiding things that could cause internal inflammation (like dairy, wheat, eggs, alcohol, sugar). Having Said that I was at my heaviest and well off the wagon when I conceived lol.

Just for you to relax maybe have a look into spa days or a good day out with your husband and I'd tell him everything. I educated my hubby to exactly wheat was happening in my body and he gets it. It's difficult as they live with endo too by supporting us but we didn't ask for this and were worth it.

Sorry for the long message back! I really hope you find some comfort soon and are able to conceive. Good luck and feel free to message me if you have any questions x

accio14 profile image
accio14 in reply to Brottonbabe

Thank you for your reply, I do tend to forget about my husband and we are trying to buy a flat/house at the moment, again something I'm very lucky for that I seem to forget when im obsessing over trying to fall pregnant and how ill I feel. We've been trying for 6months previously to my lap and I got a bit crazy, people without endo try for a lot longer so i need to relax! So my thinking as of this morning lol is focus on the husband and house take the odd paracetamol and chill out! X

Brottonbabe profile image
Brottonbabe in reply to accio14

Haha yes it can take time to conceive and it won't be rushed. Don't be too hard on yourself though, life with endo is Rubbish and will get you down. It can be easy to lose sight of things. Just try to relax when you can and, as you say, look at the things you do have and enjoy them. Take care x

Nicolahunny profile image
Nicolahunny

Sorry to hear ur having such a awful time I was dignosed with having aheadions on uteral sacral area and endo in my womb I was lucky enough to fall pregnant with endo but know how u must feel I got told that after my lap to start trying and if not pregnant after a year would have to be refered to infertility specialist but think if that hasn't happened for u in 9 months then id imagine u would then be refered to infertility clinic to descuss ur options I really hope u do fall pregnant and hope it happens soon for u both also if my pain is really bad I usually try heat pads or hot water bottle if in the house xxx

accio14 profile image
accio14 in reply to Nicolahunny

Thank you for replying :) that's great news you got pregnant and gives me so much hope. It took me 15 years to get diagnosed so I always believed I'd never get to fall pregnant and I think part of me still doesn't believe it. Yes i will get fertility help after the 9 months which is amazing but waking up to lots of lovely helpful comments I'm much more positive that my body can do this! Im off to buy some heatpacks! All the best x

Nicolahunny profile image
Nicolahunny in reply to accio14

something good always comes out of this and I'm trying fir baby no 2 over 2 and a half years but just going to relax with heat pads for rest of the day xc

Suze1974 profile image
Suze1974

I really feel for you. Don't feel mad with your bestie. I really think unless you have endo you really can't understand what it's like. It's a disabling disease that no one gets unless you have it.

I've had endo for so many years and I have been lucky to get pregnant twice. The second time was right after completing a 6 month course of zoladex. Both the gyne and I were shocked with that one because we thought I wouldn't be able to have any more kids. However the zoladex put everything to sleep for a while and let my system reboot. Now, I'm not saying this is what you should do beside I'm not a medical professional and as I said we were shocked I was pregnant around 6 weeks after the zoladex finished but it was enought for me to reboot my system.

Hope you're ok. Happy to chat to you if you feel low xxx

accio14 profile image
accio14 in reply to Suze1974

Thank you for your advice, it's very true she doesn't understand and nor would I want her too. I guess I was just angry with the situation and took it out on her...Luckily I didn't say anything to her! Experiences like yours make me feel so much better as it shows that if you are meant to get pregnant you will! Thank you for sharing! Take care :) x

Suze1974 profile image
Suze1974 in reply to accio14

You're welcome. I'm thinking of you and hoping you manage to get pregnant. You sound like a lovely person who deserves to be a mum xxx

luckyvibe profile image
luckyvibe

I understand fully what ur feeling atm I was in the same position but I was lucky in a way I had endo Mt tubes were in a mess the last scope they done the done what they could to remove it my gyn decided to try hormone treatment to shrink my woman bits (was how he described it to me all those yrs ago) so it was a male hormone they gave I fell pregnant within 6 - 8 weeks being on it which shouldn't of happened my gyn appoligised and told us not to build our hopes up as unfornately I miscarried and was told that it was for the best for both exactly a year to the date of when our 1st child should of been making their way into the world I gave birth to our gorgeous daughter who will b 24 this yr and when I was told I was pregnant and carrying her I was told to expect the worse if she was to survive we were terrified (although hubby wouldn't of told me he was worrying)

so plz don't ever give up I know right now u feel as everything is against u try an relax and enjoy ur life with ur partner because everything gets forgotton about like why u fell in love why u love being in each others arms and starts to focus on making a child together because u have said the have given u a time to try b4 they do whatever there going to do but plz don't let this get to u ( easier said than done I know that ) but enjoy each other b relaxed with each other and let nature do its job honey

just keep ur spirits up when those bad days start to take over

and I hope to read that ur going to parents whenever this happens doesn't matter how long it takes as long as u both get ur wish

good luck

accio14 profile image
accio14 in reply to luckyvibe

Thank you :) I have definitely forgotten about my husband recently, I was so wrapped up in wondering if we'd have a baby in the future I didn't really consider my marriage now. It's our anniversary next month so I think we need to have a little fun! Thank you for sharing your story it gives me hope :) x

Pinklady123 profile image
Pinklady123

So sorry to hear how you are feeling. I can relate. I came off the pill in December so we could start trying for a baby, in my head we'd get pregnant straight away but that wasn't the case. I was then diagnosed with endo in April and had a laparoscopy to remove it, luckily it wasn't on my ovaries or tubes and I had a dye test done as well and they were clear. After the lap the gyne told us to start trying again as soon as I felt ready. He didn't give us any time frames or anything like that but I am putting a lot of pressure on myself coz I'm scared the endo is going to come back and I'll be 35 at the end of the year so age is not on my side either.

People don't really understand what we are going through when they look in from the outside. I feel really let down by one of my best friends over the last few months whilst I was going through all of this as I always turn to her when I have a problem but she just wasn't there for me during this time, when I needed her the most.

A few ladies have recommended fertility acupuncture and I have booked an appointment with one who helps ladies with endo for this weekend so I am going to give that a try.

Sorry my post is not much help but just wanted to let you know that you are not alone and that I, among many others, can relate to what you are going through. I want to be a mum so badly, I just never thought I'd have to go through this to get there. Stay strong xx

Brottonbabe profile image
Brottonbabe in reply to Pinklady123

Hi, sorry to jump on the back of your comment here but I can completely relate to you. It can happen though, I'm nearly 35 and as I say after years of trying and failing I am pregnant. There are lots of ways to be a mum and it can be so frustrating when trying but every little helps as you say. things like acupuncture can help you relax anyway and that relaxed mindset is so difficult but quite important I think. Easy to say, I know. I never thought I'd have an issue with conceiving then I lost all hope. I grieved for never knowing the feeling while others around me were all pregnant and boom. I've also read lots of other recent success stories on here, which helped keep me motivated. It really effects fertility but doesn't make it impossible. Good luck, happy to chat if you need x

accio14 profile image
accio14 in reply to Brottonbabe

Thank u. I was looking at acupuncture last night but didn't know anyone who had tried it so didn't wanna 'waste' money on it. Might have to book now! Congratulations and all the best for the rest of your pregnancy x

Pinklady123 profile image
Pinklady123 in reply to Brottonbabe

Thanks for your message, it does really help me to hear success stories like yours. I don't really feel like I've been given any guidance by my gyne as he just said right your discharged, go and try and get pregnant. But then I suppose he's done his job for now so I guess I just need to wait and see what happens. Thanks again for your words and congratulations on your pregnancy xx

Brottonbabe profile image
Brottonbabe in reply to Pinklady123

Yes I was told the same. In fact the conversation went like this "I didn't remove the endometriosis but I took the cysts out. You need to get pregnant asap and don't put on any more weight" (I'm a size 16). Ha even the regional specialist said to me "wow you're pregnant? Amazing. Stay pregnant until you've had all the children you want". Right... Haha. You'll get there just enjoy it x

accio14 profile image
accio14 in reply to Pinklady123

Thank you for taking the time to reply :) Please let me know how the acupuncture goes, I'm going to look into it today! It's so hard when the closest people to you aren't able to support you for whatever reasons...as if you didn't feel lonely enough! My fingers are crossed for you! X

Pinklady123 profile image
Pinklady123 in reply to accio14

Yes I will let you know how it goes, I am hoping it will help me relax more than anything at the moment as I am obsessing about trying to conceive and know I need to switch off from it. My fingers are crossed for you too, I'm always here if you need a chat xx

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