How do you all cope with this awful Endometriosis pain while TTC??

Hi everyone,

I am really down at the moment as I have been in some awful pain for 2 weeks now!! My last Lap & dye test with removal of Endometriosis was in December last year, so not that long ago. But the pain is constant now and it wasn't before the Laparoscopy

We are officially on the list for IVF as of mid February. We are still trying while we are on the list, cause we still have hope that it might just happen for us naturally even tho my tubes are apparently partly blocked.

The only problem I am having is that I am in a lot of pain. I am in pain when I wear my jeans for work, everything hurts and I am constantly exhausted and struggle to concentrate. Its awful.

The thing is - given that we are TTC I am never taking any other painkillers other then Paracetamol just in case that I might be pregnant. We have been trying for almost 2 years and I know its unlikely to happen without IVF but still.

Is anyone else struggling with this constantly being in pain while TTC?

I have been going to a Traditional Chinese Medicine Clinic for herbal treatment and I am also going for Reflexology which I like a lot but I started this in January and might give it another month or so to see if we get results. If nothing happens within the next 2 months then I might just wait til we are getting closer to our first IVF attempt before I try it again cause I think taking Chinese medicine for 5 months is long enough as it is very expensive.

Just don't know how much longer I can cope with this constant pain and being exhausted

Thanks for reading this.

[Rungano]

It sound very farmiliar, that you are going through such physical and emotional pain. That has been ourlife for the past 17 years, i do not want to dampen your hopes but keep your expectations slightly lower

[baby_c]

Reflexology helped us fall, we had been trying for almost 5 years, but didn't do any medical stuff 1st time round as like you we were hoping not to have to.

[Hidden in reply to baby_c]

Hi baby_c,

thanks for your reply. That's fantastic

How long did you have the Reflexology treatment for before you fell pregnant?

My Chinese Dr told me today that it shouldn't take me longer than another 2 months as I am still young (I am 29) I did read a lot of his Testimonies on the wall and there are quite a few of them which are from women with Endometriosis and blocked Fallopian tubes that got told that they have no chance of ever falling pregnant naturally. These women had 3-4 month of Chinese Medicine Treatment and got pregnant and gave birth to healthy babies! So I am willing to give at least another 2 month. I had only 1 Reflexology treatment so far but I am happy to give this also another 2 month.

[lazyp]

We've been ttc 2 yrs and like you I recently had a lap but it didn't make any difference. I had also been holding off painkillers because of ttc and also my tummy can't tolerate NSAIDs. I tried reflexology but didnt help much. got so fed up with the pain that I went to Dr who said on balance she would recommend taking prescription meds even though we're ttc so have started on indomethacin & for the first time in ages I actually made it into work on the first day of my cycle. It's a miracle. So I'd suggest if you're fed up with the pain& alternative therapies aren't working go and see GP about prescription.

[baby_c]

Only about 2 months however as I work in beauty I did have 1 a week try see of there's a college near you as it's cheaper but hasn't worked this time so far

[charchar]

Hi, I have been TTC for nearly 5 years.. i'm 27 and my OH is 29. I have had 3 laparoscopy's and each time have had more endometriosis removed. I am sure it has come back again but i'm so fed up of saying about it, i'm trying to ignore it right now!

Have you tried acupuncture? I found it to be so relaxing and it helped with my pain - i was very reluctant to try it but it definitely helped. Reflexology is also really good (i think i've tried everything!) so if you can afford it keep it up!

also have you tried heat packs? like the period pain or back pain packs that you stick on? I'd carry a hot water bottle with me all week if i could.. but the stick on patches are almost as good. Also i find hot drinks like green tea or hot water with lemon and honey help a bit.

I can also sympathize with feeling exhausted and lack of concentration... i'm sure that nobody in the world understands that unless you have endometriosis, it's debilitating! do you feel like this everyday?

xx

[Hidden in reply to charchar]

Hi there, thanks for your reply.

This post is over a year old now and I have already been through our first IVF this year in January/February and we are going for our second IVF this month! Yes I have tried Acupuncture and found it very relaxing. I got pregnant on our first IVF but miscarried at 5 weeks.

I will go for Acupuncture again on this last attempt and see if I get another BFP but hopefully this time our little one/s will stick!!

Yes I also tried Reflexology for possibly a month or longer but that didn't help that much and I got told not to go for Reflexology whilst doing IVF so I prefer to stick to Acupuncture as it also increases the chances of IVF working by over 60%

Heat packs & hot water bottles are also not allowed during IVF but they don't ever really help with the pain anyway. Tried this for years and don't find heat that helpful. A warm bath seems to help more

In terms of being in pain, exhausted and tired - I feel like this at least 14 - 16 days per cycle now. So from just before ovulation right until my period is over it is exhausting and yes no one really understands this unless they have Endo themselves. It's an awful condition Hope you are doing okay xx

[charchar in reply to Hidden]

I realised after i replied it was a year ago.. thanks for replying

I'm exactly the same as you from ovulation until after my period i'm so shattered i could sleep for hours!

glad acupuncture is working for you, i really enjoyed it and felt much better after my sessions. My mum bought me a course and i was really worried about it, but it turned out to be excellent.

I'm sorry to hear about your m/c earlier this year i also had my first BFP and m/c at 5 weeks too. I haven't been brave enough to start IVF i've been putting it off... how have you found the treatment?

Wishing you all the luck in the world for your next IVF cycle xx

[Hidden in reply to charchar]

Hi, thank you

Oh no I am sorry to hear that you had a miscarriage at 5 weeks as well it's so sad. I had to start the IVF due to my blocked fallopian tubes and my very low egg count. I have hardly any eggs left and got told that I am going into menopause already due to the surgery I had on my ovaries.

We wanted to put off our last attempt to next year but got told to go for it right now as otherwise we won't have a single egg left. It's crazy as I am only 30 years old.

Apparently some women with Endo go into a very early menopause I am one of them.

The IVF itself was okay. I was in a lot of pain on the bleed that I got from the Prostap injection (down regulation). But apart from that I was okay. I had to stimulate my ovaries with Gonal F & Luveris which was okay. The egg collection was harmless and we got 5 eggs. The minute I was pregnant I was in agony. But I was soo happy about the BFP that I didn't mind. But then had the miscarriage.

I went down to Coventry for the uterine High Natural Killer Cell Test/Biopsy as my Drs think I might have too many natural killer cells. One also thinks that I have low Progesterone levels that caused my miscarriage. So this time I get progesterone pessaries until week 12 if we make it this far. And I might need steroids to calm down my over-active immune system.

Why do they think you need IVF, are your tubes blocked as well? Are you on the waiting list for IVF? xx

[charchar in reply to Hidden]

it sounds like your dr's really know what they are doing and are doing their best to take care of you!

They have suggested IVF as we have been trying for so long with no results (my DR doesnt know about my BFP as i was living abroad) i'm not going to tell them either so i can still get the IVF if i want it. I'm just so scared about it not working, it feels like my safety blanket at the min.... does that sound stupid?! they have told me to let them know if i want it, as when i went for the appointment to talk about it i freaked out and said i wanted to wait.

I've been having real up and down days recently where sometimes i just wanna give up trying all together and wish we'd never started trying and others where all i want is to go and sign up for IVF..... it's such an emotionally stressful thing to experience isn't it?

I went to my GP last year to ask for support and he sent me to a psychologist - she was useless! i sat and poured out everything... such a relief i thought that someone was going to help me to feel better.. and she just sat there and said im going to have to speak my manager, i dont think i'm the right person to talk to about this!!!!! i couldn't believe it i was so angry... and so i was having a rubbish day today and thought i'd join a forum!

sorry for waffling.... thanks so much for telling me about your experience xx

[Hidden in reply to charchar]

Wow your psychologist sounds terrible..and yes useless.

It really is an awful thing to go through and I don't ever wish it on my worst enemy!

I really can relate to the way you must feel - as I have been the same for years. After our first failed IVF I just wanted to give up and go back on the pill!! I was so depressed for at least 3 months. Sometimes I was worried that my DP would leave me..oh and my boss made me redundant during our IVF as well

It was the worst time of our lives.

Now things look brighter and more hopeful especially as the doctors are doing everything they can to increase our chances.

If you had Endo on your ovaries then you might want to get checked your AMH to see what your egg count looks like. I had an AMH of 6 at 29 years old. So now it's even lower. This means that with an AMH of 6 we only got 5 eggs. Other ladies at my age get a lot more than that. So even if you don't feel ready to try IVF just yet, maybe you want your egg count checked to see how much time you have left.

I know when I got checked for it we thought I had many years but we got the shock of our lives when they said: " It's now or never!!"

Don't worry about waffling - I am the same haha

This forum is amazing and has been a lot of help to lots of people. So welcome to the forum and if you have any questions or just want to 'talk' feel free to send me a pm

I wish you all the best & don't worry about trying IVF it is not as bad as it seems at first.

My biggest worry was about doing the injections myself and I freaked out at first but once you have done it - it really isn't that bad xx

[charchar]

thanks so much... i have followed you so we can keep in touch! i feel so much better for just writing all that down.

It sounds like you had a really stressful time when you went for IVF last time how crap that you got made redundant! last thing you needed it sounds like you are really ready for your next try now how exciting!

I sometimes worry that my boyfriend will leave me too... i'm so crazy sometimes. I think he still loves me though they have got a difficult job looking after us!

Thanks for suggesting that test, i will make an appointment with my doctor to get that arranged.

Thanks again i really do feel better. And best of luck with your IVF cycle xx

[Hidden in reply to charchar]

I am following you too

Thank you!! I got a new job now and I am not telling them about the IVF, just said I have some treatment for a medical condition, which in a way is true lol.

I am glad to hear that you are feeling better already I know just writing things down helps lots. You might want to join fertilityfriends.co.uk

The ladies on there are fantastic. There are lots of ladies with Endo, ladies that go through IVF etc and you can write a diary there. xx