Hi,
An ambulance has just left our house. Today is the first day of my period and I had to call 999 due to extreme pain that I never experienced before. They gave me strong pain killers and I feel better but I’m still in shock of the intensity of the pain I experienced today! My whole body was in agony and I was so terrified! I wondered if anyone else had experienced such a pain before?!
sadly yea. It can really stop you in your tracks and you can’t move for pain. I’m so sorry you’re suffering 
have you got any treatment options? x
Not yet. I have an appointment with a specialist tomorrow. I’ve been diagnosed very recently. No treatment options yet
Well hopefully they’re gonna find a way to help. I had stage 4 endo treatment in October. The pain levels have dropped. I’m still in pain but it’s mostly manageable now. Only bad when I bleed heavy good luck tomorrow. Keep us posted x
Don’t feel bad about calling them out, the pain unfortunately is very real. Make sure the specialist arranges a scan tomorrow to check on everything. Tell them what happened.
In the past I’ve been to A&E a few times and period started whilst there, one time I was admitted.
TBH I felt awful calling 999 but when they heard my voice they sent an ambulance immediately. I’m scared of the pain and don’t know what to do if it comes back again. I thought I was dying and I’m not exaggerating it. Believe me it was unbearable.
Well believe it, I hope it has calmed down. See what the consultant suggests, but have decent painkillers on standby, naproxen is a good anti inflammatory. If consultant won’t prescribe anything speak to GP. Scan is really important to make sure it’s nothing else.
Really don’t feel bad 🙂 it’s the disease unfortunately
Hi
There is a possibility that you had an endometrioma burst and the pain is due to the stale blood being released into the pelvic cavity. This is the worse pain ever. Once the cyst has drained then the pain will subside but the blood is sticky and will create adhesions which can cause other issues.
Drs believe the worse pain is a burst appendix, my friend suffered a burst appendix during a sporting event but this was nothing compared to her endo pain so continued with the event!
that’s interesting, how can I know if it was an endometriosis burst? I thought I was dying, the pain was all over my body, I wasn’t able to stand or walk, when the ambulance came I had to crawl on the floor to open the door for them. I had pain in my shoulders, arms, chest, tummy and legs.
Yup. Hugs. No words 😶 can make it easier but it can be soul ripping.
Thank you ❤️
Sending big hugs to you!
All the symptoms you are describing are similar to what I have experienced in the past. This sort of pain has happened to me twice- May 2023 and October 2023- both in the first couple of days of my period. The first time I was similar to you, newly had my diagnosis of stage 4 Endo and didn’t have a clue what was happening. I spoke to my consultant after this episode and he told me that everything I was describing (vomiting, barbed wire pain around my abdomen, intense shoulder pain, not being able to stand, no medication taking the pain away) could have been an ovarian torsion. In my case, I have a large chocolate cyst attached to my ovary, so he believed when I have my period the cyst is randomly deciding it wants to roll which is in turn trying to twist my ovary with it. Because of the seriousness of an ovarian torsion, my consultant told me that if it is to ever happen again, I must be admitted to hospital.
Prep with the symptoms to look out for, when I experienced the pain again, I immediately called an ambulance and was admitted to hospital. They kept me in overnight and I was given lots of strong medication and I had an ultrasound to establish whether it was an ovarian torsion. They said that they couldn’t conclusively determine that I had had an ovarian torsion from the ultrasound and with no Endo specialists surgeon in the hospital when I was admitted, they didn’t want to risk operating.
All being well, I will be having my surgery at the end of this month. So my only advice to you if you ever experience this pain again is ring an ambulance and get yourself admitted to the gyny ward at your hospital. I wish I had rang an ambulance the first time but I didn’t know as much as I do now. With my local hospital anyway, the more you harass them by being in one of their beds, the more help you get. Once I was admitted I was moved to top of the waiting list because they agreed with me that seeing as it has now happened twice, the surgery needed to be a priority.
I really hope you get treatment options soon! Keep pushing them, harass them if you have to. Sending you lots of love. 💖
Yes Bubble-z. I know exactly what you mean. I had stage 4 endo, lots of adhesions and borderline surface ovarian tumours. I was fobbed off for years by doctors, until i haemorrhaged. I thendecided to go'private' for excision of the endo(as that wasn't available at my nhs hospital) and hysterectomy with Salpingo oopherectomy. But unfortunately a lot of damage has been done to my bowel, especially the descending colon and rectum. I know the pain can be shocking ! So please be kind to yourself !! I really hope the appointment goes well for you and the consultant works out a treatment plan you are happy with. Please keep us updated . Xxx Good luck for the appointment. Xxx
I've been in a&e a few times in my 20s. I'm 27 now with a baby and honestly giving birth with gas and air was easier than the pain I get during my period. I take high dose codeine now prescribed by my GP, which isn't great. Waiting for a lap but unsure if this will stop the pain.
Diagnosed with stage 3/4 endo 
Missing out due to pain....
Lap found stage 4 endo
Stage 4 endometriosis 
Intense back pain and sciatica..pain killers daily
