Endometriosis is not fun

[Vmvm]

Hey guys,

I am 22 years old and was diagnosed with severe endometriosis and adenomyosis in November last year through a laparoscopy due to intense period paid. A mirena was also fitted during surgery however 2 weeks after surgery I began getting intense cramps basically every day along with nausea for the last seven weeks. My doctor thinks that the endometriosis has already grown back as it was so aggressive so began my zoladex treatment 3 weeks ago, however I am still in constant pain every day and pain relief tablets only occasionally work. I have also not stopped bleeding since surgery. Is anyone in the same boat and can offer me advice on how to manage the pain and why I am still going through this even with The zoladex injection? I also don't understand why the pain is so intense after the surgery as before my laparoscopy I only had this cramping during my period but now I have it every day!

Any answer will be greatly appreciated!

[Endo101]

I'm also 22 and was diagnosed with mild to moderate last year but was but was really ill with nausea every day (I lost two stone in less than a year but most of the weight loss occurred within the 6 months before my op). I'm sorry to hear about your situation. Just wanted to reply because I know it can feel very isolating especially at this age when we are meant to be at our physical peak and it brings a lot of uncertainty about the future.

[Vmvm in reply to Endo101]

Thank you for your reply! It does help knowing there are other people in the same situation! I also had nausea every day for at least 4 years and I was hoping the surgery would have cured it but I guess not. Can I ask how you manage your nausea? You're right it definitely is scary going through it at such a young age!

[Endo101 in reply to Vmvm]

Mine has improved a lot since the surgery but before there wasn't much I found that helped. On days when it was particularly bad, I took prochlorperazine which is an antiemetic I was prescribed. That helped a bit.

[Vmvm in reply to Endo101]

Yeah I've tried that and two other prescription drugs but nothing seems to help! I'll just keep on with the ginger and hope for the best! Thanks for your advice!

[Hope264]

Hi thanks for your posts. It is good to read about others. I am struggling lately with nausea that I think is related to my diagnosed severe endo. It is confusing for me as I live with spinal issues that cause pain and the medications can have side effects, but have never caused me nausea. The nausea always comes on at certain points in pill and is with fatigue that is not normal. This month it has been for weeks and I am over it. I take mylanta and when it is really bad zofran and buscopan for the bowel cramps. I can relate it is really hard to eat. Pain makes it hard too. Someone on here mentioned peppermint tea and so I tried it and this seems to help too.

In terms of managing pain. I use an electric heat pad and tens machine which is a little device that gives little shocks and seems to help when nothings cutting it.

If you are not getting enough of a break from the pain please let your doctor know and ask for help with strategies to try to manage it. Different medications will work for different people. I think Ongoing unmanaged pain needs an active approach or I understand it can end up ramping up the nervous system to be more sensitive and persistant pain becoming more of a problem of it's own too. I'm not saying go and take strong medications without looking at all your options, in fact the opposite. Medication is not for everyone and when used it should be one facet of decent pain management help from medical people. The best thing I can say from experience is it is easier to treat pain before it gets up than trying to 'chase it' doesnt seem to work at all. Regular paracetemol is a good addition to trying to get ahead on any pain I have been told by go and have to agree, even with other medications. NSAIDs help me but they don't like you taking these as much longer term these days with all the health risks. I have found Krill oil good when I can stomach it for inflammation plus enzymes and pro biotics to help the gut.

I hope you have a good GP or other health professional who listens and takes your knowledge of your own body seriously.

I am not familiar with zoladex but I hope it helps you soon. If I hear it works I might try it myself as I am getting pretty fed up too. Take care and hope you feel better soon and can eat some yummy food.

[Vmvm in reply to Hope264]

Thank you so much for your reply! Your words mean a lot and there is a lot of stuff you mentioned that I will definitely give a go! I completely agree with treating the pain before it gets bad as I always leave it until it gets bad and then the tablets take too long to help! I'm on my second cycle of the zoladex and so far Ive noticed a little bit of a difference. The pain has definitely settled and painkillers seem to help it on most days and the nausea is still unfortunately there but I do have some good days. The side effects however are quite full on and the fatigue is another level! I'll let you know how I go after I finish.

[Hope264]

Thanks, yes I think my endo is resurfacing. I think nausea and fatigue is worse than pain sometimes as you can still find a way to go about your daily life with pain. I hope some of those things I have found for myself over the years can help you, it is always hit and miss to see what works. I was interested to hear the mirena was not good experience as it has been offered to me recently. Do let us know how it goes on the Zolodex and best of luck in ongoing recovery. Hope you feel better soon