Up at 4am in pain :-(

[jjm1986]

Hi guys,

I'm sat here at 4am, having been woken up by excruciating period pain, with a hot water bottle, pain killers and am trying not to burst into tears.

I had a lap last year, with lots of endo found and removed. Symptoms came back and I was told I had micro endometriosis and was put on cerazette to help with symptoms (can't be on other pills due to breast cancer risk in my family).

It's played havoc with my body, with periods every few days and the most horrendous pains. I had to take time off work for the first time as I couldn't stand up with endometriosis pain.

I went back to the GP to discuss it and while they were sympathetic, they said it takes a while for the pill to settle down. I'm now on cerelle, and finding myself here at 4am in pain on my third time of bleeding in the past month.

Has anyone been on these pills and had this problem? Did it settle down after a while? I'm on my fourth month now...

Also, does anyone have any pain management tips? It'd be nice not to wake up in agony.

X

[Sjt82]

I really do feel for you. I have endo and had a lap at Christmas, but now I have had stimms for ivf it has been growing the endo cysts I have and they also said it was in some of my eggs. I can totally sympathise with you, the pain can literally cripple you, and people who havent had it sometimes dont seem to quite 'get' how intensely painful it is.

I was on the pill b4 i started wanting a baby, and my symptoms were much more manageable then, but you are limited to what you can take I see. I dont have any magic tips I'm afraid, just make sure you keep on at your doc, because they dont seem to take endo as something that needs help, but I guess you know that. Look after yourself xx

[jjm1986 in reply to Sjt82]

Thank you! It's such an awful disease, struggling with pain management big time!

I really hope the ivf is successful for you and doesn't cause too much pain.

Xx

[Shelly92 in reply to Sjt82]

I have never heard of doctors knowing it was in eggs.

I'm sure it's very possible the stuff goes everywhere

But in your eggs ?

You mature a new egg every month so I'm confused how they see it in all your eggs.

If you are hoping for a family .

Get IVF ASAP . If your not ready go on the pill or something that will stop your cycles for awhile so you can have a break.

I finally did that so glad I did.

First three four months on the pill I had some pain by the fifth month gone .

Much like I assume a pregnancy would act .

If you are tearing out your hair and can not take the pain any more and you are not ready for a family I would tell anyone go on continuous BP.

Stop those damn cycles in their tracks .

Feel what's it's like to breathe again .

Feel what it's like not to have to worry that your painful period will mess yet another event .

Of all I've heard all I've read and myself and some I know I feel this is s the best thing to do .

Plus it's not good to keep ovulating for months on end with no interruption of pregnancy .

It's just not great for your body .

Even though it's supposed to be natural . We were not meant to ovulate for years and years .

Our bodies prepare every month for conception .

When that does not happen we have a period .

But even with animals it's not good for ovulation to go on and on and on .

So give your body what it wants.

Give it a break . -

And maybe also but more time till you are ready for conception.

[Sjt82 in reply to Shelly92]

Hi shelly92, the drugs you inject for ivf make you mature as many as possible so they can 'harvest' as many as possible. Some ladies are lucky enough to get some frozen if there are enough healthy ones, and it saves them going all through the wks of injections and egg collection all over again if it's unsuccessful and they want another go. A trigger jab makes it possible for them to remove all which are ready in one go. I didn't have endo in all my eggs, and I don't mean they were full of it, they said they had specks of it, so they don't want to use those, as they are obviously not healthy from the start. It's a hazardous journey, with lots of obstacles, it's a good job all us ladies are so strong! 💪🐣

[Shelly92 in reply to Sjt82]

I have just now heard of endo in eggs .

Which makes the ( you were born with it ) a real possibility since we are born with all the eggs we will have .

I did not have IVF dr did not think it would work great back then .

One dr just kept medicating my ovaries to hyper stimulate for a year

I think that did major damage

[brumchica]

I tried cerazette about ten years ago and had the same experience-erratic, frequent periods and the same amount of pain. Then 6 years ago a new doctor suggested I tried taking a double dose and having two a day. I was willing to try anything so gave it a shot and found it worked a treat for me. It completely stopped my periods and I never felt pain! I'm trying to conceive at the moment so have had to come off them and unfortunately the pain is back, but I feel like I want to shout about it to anybody else to give it a go because for 6 years it changed my life, I never had to worry about it!

The MP Oona King did the same thing. If you search 'Oona King endometriosis The Guardian' you will find a great article she wrote about it.

Every body is different and endometriosis is different for different people but it is worth having a go. Maybe suggest it to your doctor and see what they say. I hope you're feeling better soon xx

[Shelly92 in reply to brumchica]

To brumchia

I'm not sure what Med that is but if it stopped your period for a bit of time you know the relief you feel.

If not pregnant in three months I would not hesitate to do IVF.

I wish I had . And I wish it had been more successful at the time .

Now there is a very high success rate .

They put your baby in uterus past all that nasty endo and endo can't touch it then .

[brumchica]

Just reread that article myself and realise she doesn't actually say she had two a day. So it doesn't back up what I said at all! But is still an interesting read! Anyway, it worked for me. I hope it might for others xx

[jjm1986 in reply to brumchica]

Haha, thank you! I actually read that article when I was awake earlier, it's so good she spoke out about it.

Thank you for the advice about the pill, seeing my doctor next week so will discuss it then.

X

[mihaelad]

I am sorry to hear you're going through so much pain and suffering... I know how hard it is.

4 months is way to much, it will not settle in unfortunately. I am in US and I had similar experience with same medication but under a different name. I had to increase the dosage to make the bleeding end. And I had to do that every couple of months. I started with 5 mg and end it up with 20 mg. I did feel better on the pill because I finally had a few months with no period but I started having other bothering symptoms..

Definitely you need either a different pill or more of it, 4 months of irregular bleeding is too much.

Hope you feel better!

[happyseal]

Hello JJm

I really feel sorry for you...that is really horrible, I've been there and I do not want to get back to that situation. I am not sure what your GP have talked with you so far, but on my opinion a great way to see endometriosis is as a life lesson. Sounds rush I know, but I do say life lesson because it is a wake up call for us to change our life style and get to know ourselves, besides that it does not have a cure, you'll only be able to manage it, and that's why is really connected to your lifestyle and the changes you need to do.

If I may share my story, I was dying of pain during my period, ovulation, etc not a long time ago. About 3 to 4 months ago. I did change a lot of things in my life since then and it has been helping me a lot. My last period was amazing...I had no pain and could even run and workout during my period, something I usually could not do. Had my crazy mood swings bu no pain. I still have somethings to work on, but so far I'm happy with my results.

I do suggest you the following book, so far, is one of the more complete books I have read about the topic. It talks about diet, supplement, etc. The book is: Endometriosis: A Key to Healing And Fertility Through Nutrition by by Michael Vernon and Dian Shepperson Mills, the authors are a great mixture of nutricionist that had endometriosis and a scientist. Great book. I just read the book after changing somethings in my life actually. But the book is really great.

Things I have done so far that helped me a lot are as follow, but you can find more things I have found on my website:

1 - Cut toxins out of your life (toxins are in everything basically...water, food, cosmetics, air, etc)

2 - Cut toxins out of your system (if you cut out of your life is already great, beside doing some detox to get rid of the stored toxins)

3 - Change your diet and lifestyle (you cannot postpone this and you should change one habit at a time because it is not easy task).

4 - Supplement yourself with nutritional vitamins and minerals (for example: Magnesium helps really a lot, and instead of pain killers using magnesium is much better and less toxic for your body).

5 - Good supplements for endometriosis woman are: Agnus cactus (if you have tender breasts and mood swings), Evening primrose, Milk thiestle (to help your liver to clean toxins), and omegas (like fish oil, etc).

6 - Add some healthy drinks that will help you with your pain: Golden milk (a tumeric tea that helps a lot with the pain), ginger tea (great for PMS and pain), pure cacao (very rich in magnesium).

This is what I have been doing to help me with my pains. I can't say it'll work for you or you should or not do it. You are the expert in your body and is good to understand it so you can choose what should you do. Moreover, I don't know how open is your GP to natural approaches to help you. This is all up to you to decide. I decided to take control of my life, my body, and mind so I can help myself have a healthy life without pain. I do not regret it...it has been really good for me.

Well that is a lot of information, but I have been sharing what I find on my website, it still under work because I'm not a English native speaker, but hope this will help you.

My website: endometriosis-aware.com/

The book I told you: amazon.co.uk/Endometriosis-...

Hope this helps you somehow...and I'd love to hear that you succeeded.

[Booboo08]

Do you have a shower? If so blast your ovaries with hot water . As hot as you can stand. Then jump bk in bed with a hot water bottle.

I do paras and ibruprfen every 2 hrs.

Rest & chocolate

Hugs im goin through it atm and its a piggin nightmare!

[jjm1986 in reply to Booboo08]

Thank you! Will def try the shower technique. Hope things get better for you too x

[jjm1986]

Hi, it was mainly around the ovaries - none of my bowel, etc.