So much pain 😢

[Smoff]

I can't cope with this pain! Been awake for hours. I have taken paracetamol and tramadol, am currently folded around a hot water bottle and have listened to my relaxation app (which ALWAYS helps me sleep-but not today!!)

My gp put me on norethisterone but said i have to have a break every 10-15 days. I didn't listen to her and took it every day. This caused my depression to worsen. Gp said i HAVE to have a break. I knew this meant i would have a period but i took her advice. And here i am....heavy, extremely painful period!!

Not back at the gynae until November. Just recently had another (useless) ultrasound scan, which brought up nothing. Time between appointments is agonising!

Even though i have a written letter from them suggesting endo and adoeno, gynae has brought me back round full circle saying we need to find a diagnosis!!!!

How long does this have to go on for?

Has anyone at all found a way to cope with the pain? Has anyone at all been properly diagnosed and receiving treatment that works?

Help!!!

[Nicolahunny]

Aww Hunni sorry to here your having a awful time I had a laprostopy dignosed endo on my womb and aheasions in my pouch of Douglas ur symptoms sound pretty much like endo but I'm getting to the stage were nothing helps my pain I'm in agony when I'm on my period to I c the hospital today so hope they can give me answers I had a scan two weeks ago which showed a cyst on my right ovary I hope that gynae can get u sorted to xx

[MrsQ91]

Its so hard to give advice on coping with it as everyone is different, but I used to always carry my hot water bottle around with me, being on my feet top long would always make it worse later on in the day so try and rest x I was going to my gp for 2 years before they even transfered me to the hospital to see a specialist, I truly know how frustrating it is, u really arent alone. I finally had laparoscopy and got diagnosed. It felt amazing to finally reach a point where I had some answers. I had 3 surgeries and on my final one I had to have my tubes removed and my adhesions cut and lasered. This was deverstating as we were trying to conceive. After this surgery I was in bearable pain compared to chronic pain like before, this only last a year x there is hope and coping mechanisms, its just finding the right one for you x

[Ruby5]

Hi, I have suspected endo and I'm really trying to get a diagnosis too so I know how you feel! I always use my hot water bottle and try and focus on doing deep breathing to kind of distract me from the pain, it helps sometimes and it sounds silly but you never know it could work for you too. Good luck on getting a diagnosis, I hope you get one soon xx

[Naomi1002]

I had pain 24/7 and it kept me awake at night.

I started with gentle yoga exercises, which aggrevated it first, but i have less pain now.

I find it hard to read that you are suffering so much, it shouldnt be such a struggle. Can you make an appointment with GP again, maybe a different one? It shouldnt be that you are in so much agony that there are not able to help you with your problems!!

Scan wont show anything, except cysts. If it is endo they need to do a keyhole surgery, because they are not able to see it otherwise.

They never gave me treatment, because they thought after it was removed it should be fine, but i was in pain constantly after surgery and no-one gave me help or suggestions, so i had to find it myself. Went to a physio for some exercises for my back and started to look online for yoga. I didnt want to take painkillers, because it isnt good even though the GP said this was fine and acceptable to take them everyday, but i didnt want this as a solution.

For my moodswings i started to follow a course called CBT, which is really helpfull and this really helped me with thinking more positive.

I really hope you can sort it out and keep going back. It is your body and your life.

Good luck

Naomi

[Rrl12345 in reply to Naomi1002]

hi lovely ladies, so sorry to hear suffering and in pain, I know exactly how you feel I am struggling loads at the moment and the back pain seems to be getting worse now too, I was awake all last night with hot water bottles and meditation cd on and nothing helped, I could cry today and I have a high pain threshold, us endo girls don't moan or complain we suffer in silence but today ive had enough. I don't have a gynae or any support from doctor just a rubbish diagnosis and by gynae two years ago who has butchered me as not an endo specialist and pain has got worse since he did the lap. I would be really interested to know where you found info about physio and yoga for endo? as long as we all stick together on here at least we know not alone, people just think it is a bit of bad period pain they don't realise how much it takes over xxx hang in there lovelies x

[Naomi1002 in reply to Rrl12345]

I went to see my friend for physio session and the gp did talk about it before as well, but gp didnt seem to press to much into physio anyway. My friend gave me some gentle exercises for my back and legs. I started with yoga, because

I did a course for baby yoga to teach to parents and i really like to do it, so that is how i started to do yoga myself.

I am sorry to hear about your pain. Not good at all!!

Naomi

[Rrl12345 in reply to Naomi1002]

thanks Naomi for coming back to me, does your yoga help your pain? the back ache is getting ridiculous at moment so don't know if bad sign and endo on pod getting worse, hard to tell with no medical support but thanks for info on physio, my doc wont take me seriously so may have to look at privately, why do we all end up having to self fund our treatment, it is ridiculous isn't it - just anxious about walking into yoga class alone xxx keep smiling lovely

[Naomi1002 in reply to Rrl12345]

It seems to help with me. Because i have been inactive for a while i think the pain just taken over and all i could think of was pain and how horrible life did become.

I did a course CBT and that was helpfull with negative thoughts and getting out of this negative spiral.

I sometimes still suffer with pain, but i try being more active and think more positive. Of course everyone is different and has different problems and docters in generally are not helpfull because they dont know what endo is or what it can do to someone, it would be nice if there is more understanding and knowledge out there to built up a picture and get women quicker diagnosed.

You can follow yoga online as well. Have a look on youtube, and if you feel anxious of going to a class maybe go with a friend.

You keep smiling as well!!

Naomo

[Rrl12345 in reply to Naomi1002]

thank you so much lovely xxxx

[Audzluvinpink]

This might sound a little crazy... But when I'm in that hellish pain, where nothing is touching it, I have someone(usually mom or dad) drive me around. For some reason, the slight "shake" or whatever, seems to break up the pain a little. But besides that, HEAT! As I'm sure you know.

Good luck girl! I myself am in a flare right now :/ we will get through this somehow!

[Smoff]

Thank you ladies. I am going to ring the gp today. This isn't normal! I am taking time off work now as the pain is too much. I am a secretary so sitting down most of the day.....which won't help.

Hot water bottle is my best friend at the moment too.