Extreme pain during down regulation

Hi ladies,

I also posted this on the Endometriosis UK page as I have Endometriosis.

Hope someone can help me.

I am on Protocol 9 and currently down regulating with Prostap.

Got the injection on 31.12. and I started bleeding last night. The thing is I know they put me on the most aggressive protocol with the biggest amount of drugs but I am in so much pain at the moment that I don't know how to cope. I suffer from Endometriosis on bladder, uterus, ovaries (which all got operated on over a year ago) and have adhesions as well.

Last night I got very sick and got bad diarrhoea (sorry for TMI) also have very heavy bleeding and shooting and stabbing pain everywhere. I went into work this morning but had to leave as I couldn't sit or stand any longer due to the pain. I work as a Nanny and need to be physically fit and not sit there with tears in my eyes.

My boss told me to get a taxi, which I did. So had to leave my car at work.

How do you ladies cope with all the pain and is it normal to be in so much pain during IVF?

My periods are always very very painful but usually I take strong painkillers to get me through the day which the nurse said I am not allowed while going through IVF. She told me to take 2 paracetamol every 4-6 hrs and that's it. Well these don't even touch the pain I am in :-(

I feel terrible about having to leave work early but I got vomiting sick due to the pain.

Has anyone got any advice? Will this get better any time soon?

Hope someone has some advice for me.

Thank you xx

6 Replies

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  • HiInes2885. So sorry to hear that you are suffering so. It almost seems as if your endometriosis has flared up again?? Not too sure what protocol 9 is, but it seems as if the injection you had was a fast form of down regulation? I would have thought that a longer, slower form would have benefitted you more, but obviously, I don’t know your history, and your consultant, I’m sure will have your best interests at heart. Regarding pain relief. You clearly suffer loads with this, and wondered whether you have ever been referred to a pain management clinic for their advice and help - might be worth pursuing if you already haven’t. Try not to feel bad about not being able to work for the moment, as clearly you need to look after you. I would definitely see your GP too and see if he/she can support and advise you at this time. Obviously, I hope all soon settles down and your treatment goes to plan. Diane

  • Hi Diane, thank you so much for your reply. I am on the most aggressive protocol with the most amount of drugs due to a low egg count. Protocol 9 is the long protocol.

    The Endometriosis has affected my egg count which is why they hope I will respond to the treatment. I called the clinic and they said that the drugs can make my Endometriosis pain worse, which it has. The nurse said I could take Buscopan 3 times a day which I am doing now and this helps a bit more.

    My last operation was early December 2013 which is when I got diagnosed and when they also put me on the IVF waiting list.

    The Prostap injection which I got apparently makes women a bit menopausal and is for down regulation. Then I will take the nasal spray for a few days and start with the daily injections.

    No I have never been referred to a pain clinic as I only got diagnosed over a year ago. Then I managed the Endometriosis with surgery and the Endometriosis Diet and also an enzyme called Serrapeptase. I did well on this for about 6 months until I started the IVF but before any of this I suffered for 18 years. Ines

  • Hi Ines. Many thanks for clearing that up! Now I understand what you are having – starting off with the Prostap injection. Hopefully, when you start the nasal spray that will help to calm things down a little more, before you have your scan in order to start your stimulation drugs. You’ve certainly had a lot to put up with for 18 years!! Pleased to hear that you have been prescribed Buscopan, which is fine, so with this and your nasal spray, hopefully you will start to feel better through the cycle. The serrapeptase you are taking is often helpful too (one of the “friendly” bacteria). I really do wish you well with all of this Ines, and hope they manage to collect some good eggs from you. Diane

  • Thank you Diane :-)

    I did stop taking the Serrapeptase on the day when I started the IVF as there isn't any research if it is safe to take during IVF and pregnancy. But I still take Ubiquinol (CoQ10), omega 3 and pregnancare conception. Hope some of these help with the egg quality. Been taking them for over 3 months now. Thanks again and I will keep you all updated. Ines

  • Hi. That’s fine. As long as your consultant is happy with the medication you are taking, then go ahead. Definitely with the Pregnacare, as it has the recommended amount of folic acid in, which I’m a great believer in. Yes, do let me know how things progress, and if you feel I can help you at all, do ask away! Diane

  • Thanks for this question. It has been helpful for me as I am going through something similar. I also have endometriosis and adenomyosis. I am on a long down reg with Buserelin + Testosterone for egg quality/ quantity. I have been injecting the Buserelin Acetate for 20 days and I've got 8 days until I have my baseline scan. I had my period, then I had the usual spotting and discomfort that I get the week after. Then everything seemed pain-free and the spotting had gone, too. But in the last few days, I have had a lot of pain on my left side - which is where I know I have endo cysts x 4 in the ovary and a hydrosalpinx. It burns, swells, stabs, throbs and feels like prickly pins and needles. It's probably a 5 or 6 on the pain scale. (Unable to do normal activities, unable to think clearly.) It's been so bad I have not been able to sleep properly. I've taken paracetamol (which reduces the pain). I 'napped' in the day for five hours. (Luckily I'm not working at the moment.) I've started to have a brown, bloody sort of light bleed. I was unsure whether to call my clinic, but it helps to know that this can happen whilst down-regging. I thought it would even out after a while and I wouldn't get any pain. Like Ines, I will also be on the highest dose stimming (Menopur) due to being a poor responder. I think this is common with endometriosis?

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