Incredible increase in Endo pain after IVF. Any advise?

[Emilyemerb]

Hi, I was diagnosed with stage 4 endo over 7 years ago, have had 5 ops to free up and remove scarring. I had My first round of IVF in Mar/ April this year and have been in agony ever since. The pain is sharp and always on the left side and it feels very reactive to my bowel movements. I'm so bad that I'm on Oramorph and tramadol, which are not really even helping. I've had bad flare ups every day since and the hospital are very reluctant to operate due to me having 5 operations already. They just keep medicating me and sending me home. I'm devastated now and totally crawling the walls. I really need any advise anyone can offer? Unfortunately I've moved from Liverpool (where I had the IVF) to a different part of the uK just after my cycle and unfortunately now they can't treat me. And my new hospital are just so hesitant to do anything besides a scan. I've read something similar happened to someone on here about 5 years ago but not many people had the same issue. I'm hoping someone else had a similar experience and can offer advice? Xx

[Batfoss]

Actually if you are already stage 4 then ivf can often make you worse if it doesn't work because of the huge amounts of stimming drugs you've had which have driven your endo crazy. I understand your hospitals fears but you also can't go on like this although I assume you will want to try IVF again?

Is the new hospital equipped with good surgeons or don't you really know the backgrounds?

I was in a similar position to you about 4 years ago. My unsuccessful cycle made me really ill. My solution was to research endo specialists over and above the ones at the accredited centres. The one I found after many months of looking has been my life line. I think you need to have a conversation with someone very knowledgable in the field to talk frankly about your options and the possibility of surgery while preserving your ovarian reserves (even if you go back to your original hospital. Just a second opinion is worth milions). Whereabouts are you? I was lucky to find my consultant who isn't that far away from me and he was just brilliant. And honest with me.

The other option as I see it is to carry on with the pain relief and go for another cycle (if indeed that is your plan) with the knowledge you may either get worse again, stay the same or get pregnant and hopefully a bit of respite.

So hard to be where you are. Sending strength. X

[Emilyemerb in reply to Batfoss]

Hi, thanks so much for your reply, I'm based in Scotland now and the clinic I was referred to told me they were one of the best. Unfortunately I was never told by the team in Liverpool doing the IVF that I would run the risks of Endo getting worse. With the pain I'm in, I'm as far as considering having everything removed, just take out my ovaries etc. I didn't know that I could go to different doctors with the NHS? Or did you go privately? The pain killers are starting to wear me down now too so I need a solution quickly. They went to prescribe amatryptaline but I did want to take any sort of anti-depressant, even if they are really low so they have given me something called pre-gabalin but when I went to take it,, it specifically says do not take if you suffer with constipation, which I do because of the tramadol, dihydracodeine and Oramorph that they've given me. I need these every day so constipation is a regular thing so I'm now afraid to start taking that as the constipation is so bad that it's making me vomit. I know it's a bit TMI but it's often over 7 days before I go if it's bad. Sorry for the lengthy reply, I'm just so relieved to see someone who has heard it can make it worse. Xxx

[Dangermouse381]

I have a slightly different story where I hadn't had endo diagnosed. I was extremely lucky and fell pregnant 1st round of ivf.

I found I had ohss due to over stimulation. I had agonising pain even more so once I was pregnant long after the ohss had settled I can now only put this down to endo. I have just had excision of endo. It was on both my ligaments , on bladder, bowel, in ovaries and also have Adenomyosis. I've questioned and Google if the over stimulation of oestrogen can make endo worse but like you, I couldn't find much about it.

Prehaps you need to get the ball rolling and have more investigation to see if endo is back before you go down the if route again? They cannot refuse the treat you. You must be referred to a bsge centre, who can treat endo in all areas.

I wish you luck hun. Tough times & I know just how hard it is xx

[Emilyemerb in reply to Dangermouse381]

Hey, thank you so much for your reply, it's awful to hear it brought it on. Honestly IVF should come with a massive warning about Endo and the possibility of getting it or making it worse. I'm so happy you managed to get pregnant from it though. What's a bsge centre? Are they in the uk? It sounds like it went crazy on you. Did your op fix it all? Have you been pain free ever since? I'm sure it's back as everything has shifted internally, my uterus has tilted right back and also half way through my IVF treatment, the base line scans became unbearable and I thought it was a nurse being rough but now I know it's because the endo was back and causing havoc! I just want relief and I will never complain about little aches again after this!!

[Hidden]

Iv had two unsuccessful IVF attempts and each time it did make my symptoms noticeably worse, with pain and heavy bleeding increasing. Understandable given the hormones being mucked around so much. I decided I couldn't face another treatment in the end so we accepted being unable to have our own family. Unfortunately there are no easy decisions to make with this condition. But as Others have said you need to insist on talking to a knowledgeable consultant to work out what your options are do you can make informed decisions. Best of luck x

[Emilyemerb in reply to Hidden]

That's such a tough decision to make and honestly my fiancé and I are at that stage after just the one cycle. I was on the meds a lot longer and they increased my doses hugely during treatment as I was not producing as many follicles as they would like. So it may just be that we adopt or foster a child or look at egg doners perhaps.

[Nikki84]

Hi, I have PCOS as well as endometriosis and Adenomiosis, like you I was having fertility treatment at Liverpool, I was on Clomid and about to start IUI that's when they discovered how bad the endo was because it showed up on a scan, Endometriosis feeds on oestrogen, I am stage 4 thanks to the clomid, the fertility drugs over stimulate which produces oestrogen so it is likely that your Endometriosis has started to grow again, hope this helps x

[Emilyemerb in reply to Nikki84]

Yes it does, I figured as much because I've never had the pain to be this bad in my life and so constant and it all started during the treatment. It took Liverpool ages to admit that people with Endo can have flare ups but I rang them recently about the flare up and the first thing she asked was do I have Endo, which says it all really. She also said they would have done a lapo by now and that my hospital can ring them but my Docs didn't even take their number. They are considering my case at their next monthly meeting, the whole thing is just crazy. I hope they decide to operate and I hope they are good surgeons. I will go away and do my own research on it now about whether the Doc I've been referred to is any good.

[Nikki84 in reply to Emilyemerb]

Have a look for the NHS guidelines on Endometriosis, print it off and take it to your next appointment that states that you should be referred to a specialist centre and I do not live in Liverpool but I am getting treated there, I was private at first but then went on NHS when Endometriosis was found as they are the closest specialist centre to me, hope this helps x

[Emilyemerb in reply to Nikki84]

I'll look at that today, thanks. I wasn't living In Liverpool either but it was said to be the best for IVF. I have been referred to an Endo specialist but she's the one putting off the surgery because she feels it's very complicated due to five previous ops I've had. Anyway I'll keep you updated on how I get on. Thanks again for your help. Xx

[Hidden]

Emily and Nikki, are you both at Liverpool Women's Endo centre? Iv moved back to Liverpool and am now having to consider transferring my care from Hertfordshire, where Iv had the same consultant for 10 years. I'm really nervous about starting all over again with someone/somewhere new, even though I know Liverpool women's is a BSGE centre for Endo x

[Emilyemerb in reply to Hidden]

Hi, I'm not living near there anymore, have moved up to Scotland now so Liverpool couldn't follow up my treatment and where they could have started a second round quite quickly, I now have a years waiting list, which makes all this even worse because I don't want to do another round knowing I could have another flare up. Liverpool is just where I did my IVF but was told it was one of the best centres around. Hope the move goes ok for you. I'm sure you will be fine. Xx

[Nikki84 in reply to Hidden]

Yes, they are really good x

[EK20]

Hi how are you doing now with the pain? I’m also in a lot more pain now since i did ivf so just interested to see how you are now I hope it’s a bit better. Thanks