IVF with severe daily endo/adeno pain?

[Rockflower]

I just wondered if any of you ladies had been through IVF, with pretty severe daily pain (probably due to endo, adeno and endometriomas!)

I'm 4 months out of surgery to remove endometriosis... Which I thought was going to be good excision, and bring some pain relief, but the surgeon may not have been that thorough! Had several endometriomas excised, recto vaginal endo excised, endo nodule removed from the bowel, adhesions removed.

Geared up for another round of IVF, had the consult and then had my surgery review. Not great as I already have 3 small cysts growing on my ovaries (2 could just be simple, but one looks endo) and a 3cm endometrioma behind my left ovary. Also told it looks like I have adenomyosis.

I had already started my IVF (had baseline scan) when my pain decides to ramp up. It's not subsided and now I'm going through it with this horrid constant back and pelvic pain.... Consultant decided the down regulating drugs might help ease things And to continue when we discussed it, as things will just get worse if we wait... But the injections haven't yet made any difference, (it has only been three days so possibly too early)

Has anyone been through ivf with such pain? any tips on coping as limited with painkillers etc. I've been allowed co-codamol for now. Experiences please... Good or bad.

[Ma3clark]

I always find the drugs upset my body for approx 7-10 days when I start on them and then pain eases. I have endometriosis too and am bothered particularly with bowel/bladder pain. I stick with codeine based meds during this time but they don't really take much of the edge off. I also try to be careful with what I eat and drink and use a heat pad. I find it really hard going (and cry a lot!) but in my experience it does ease off. Wishing you lots of luck xx

[Rockflower in reply to Ma3clark]

That's good to know your pain subsided a bit after a week or so.... I'm usually ok with the down regulating drugs and feel ok (however I did cry at something ridiculous today, but that could be due to pain and feeling so low). I'm sorry you have had to go through IVF, and that you have the evil endo. Bowel and bladder pain must be miserable. It's usually my ovaries that hurt the most as always got endometriomas popping up.

I am using a hot water bottle and heat pads for work, which is helping, so thanks for the advice on that. I am trying to limit my codeine to the odd tablet, so hopefully come transfer day (if we make it that far) I can just go onto paracetamol when I need pain relief.

Thanks for the good luck xx

[Sjt82]

Hi, I had a lap at Christmas to investigate unexplained infertility and they discovered and removed a 'chocolate cyst' while they were in there. I had always susspected I had endo, but just thought I was soft and it was just normal period related pain. They discovered an endo cyst on both sides when I started scans with ivf, and the fsh drugs are growing them too, they are both 20mm. I dont have anything near what yours sounds like, but from what I have read in all these forums, if you dont have endo, its not as painful (obviously! )

I am due egg collection Wednesday this wk as long as my scan today is ok!

Hope yours goes ok, fingers crossed for you! I am so glad I found your post, thought I was only one that was thinking endo makes this a little worse with the stimulating drugs!

[Rockflower in reply to Sjt82]

Hi, thanks for the reply.

Good luck for Wednesday! I have had IVF before and been through egg collection, it all went ok and was no where near as bad as I though it would be. But I had mild ohss so was poorly the day after EC.

My first IVF I had a 4cm endometrioma on my right side, and that's how I got diagnosed with endo. I had no pain from the cyst, but the endo diagnosis was not a surprise, it also made me realise I wasn't being a wuss every month and that my severe pains were more than just normal period pains that my GP had put it down to.

I'm sorry you have been suffering to with the IVF. I remember feeling full and uncomfy by your stage... I had 17 eggs collected so no wonder!

Good luck Hun. I will keep an eye out for your posts xx

[Tywo]

Hi that happened to me as well but as you having injection you are not allowed to take Ibrofen my consultant advised I take only paracetamol. And what also happens is that if you have a cyst when doing IVf the injections will trigger the cyst and make them big so speak to your consultant about this. Good luck with your Ivf and I hope it works for you

[Rockflower in reply to Tywo]

Hi. Yes, I stopped taking naproxen before my injections started as consultant said only paracetamol and codeine if I need pain relief. My consultant is aware of all my cysts and is keeping an eye on me.... Fingers crossed the simple cyst will have gone before I start the stimms.

Thanks for the good luck xx

[Marylyn]

Hi ! your pain could be nerve pain due a vitamin b12 deficiency which can cause endometriosis & infertility.The drug Metformin can deplete Vitamin b12 as well.I am a fertility awareness teacher & I have just had a client achieving for 4 yrs,failed IVF as she had low Vit B12 took sublinqual methylB12 spray under tongue & fell pregnant 4 months later much to her amazement.So you need to ask your dr to check active Vit b12 ,folate,ferritin,iron,vitamin d levels just to make sure you are not low.Good luck.

[Rockflower in reply to Marylyn]

Thanks for the post!

I had bloods done a while back. B12 level was ok, only had a slightly lower reading for either ferritin or folate (can't remember which one now) and advised to take a multivitamin with iron. I also had very low vitamin D, which I've had high dose to compensate (and still take vit d for). I also have had reccurent miscarriage tests (as I've had 4 chemical pregnancies) so I am on high folic acid as I had high homocysteine levels. Xx

[Marylyn in reply to Marylyn]

Were you tested for MTHFR it's a genetic mutation that cause malabsorption of folate & Vit b12.also it can cause repeated miscarriages,toxaemia premature birth,blood clots.Folic acid is synthetic meaning the body has difficulty using it & unfortunately it masks Vit b12 deficiency by stopping the cells becoming large macrosomia.Both my hubby & I are MTHFR & were misdiagnosed because of inaccurate serum b12 levels 191 & 290 we were told they were in normal range.We now know that below 450 nerve damage has already occurred in our bodies.

[Rockflower in reply to Marylyn]

Not 100% sure, as it was a few years back, but think it's done as part of the recurrent miscarriage clinic. I will double check... They never gave me written results, but hoping I have it written somewhere what they tested me for.

I know there is debates on the b12 levels and I couldn't seem to find a definitive level that's considered normal when I looked years ago for one after bloods at my GPs surgery.

[Rockflower]

Thank you all so much for your reply ladies, it's greatly appreciated as I have been feeling very alone with my endo pain and worries with IVF etc. I will go through and reply to each one of you xx