I have been diagnosed with endo,Does anyone else get a flare up with severe pelvis and abdominal pain? every 3months? been hospitalised time

[BrightLights88]

Been diagnosed with endo since sep 2018, been hospitalised 7 times and put on pain relief to support me to get walking again, as my left thigh gets really weak with pain. Still waiting to get surgery.

[Tillyfloss]

hi. How you feeling today? I was the same, every 3third month just floored me. Have you had any scans? Mine was being caused by a troublesome cysts. The only thing that helped was a week on high pain relief in hospital. Are you seeing a specialist? Xx

[BrightLights88 in reply to Tillyfloss]

Morning. yes that's me too. I have had scans every 3months as they wanted to keep an eye on the one behind my uterus as it was the first trigger point that caused me to stay in hospital for 2 weeks from the start. Then 2 months later I was told on the scan that I had teo more in my ovary. So since December I have 3 now. The left two are giving me more problems now as they growing and I'm bleeding into them according to my gynaecology specialist so she referred me for surgery. been waiting since December had a pre OP and still not surgery date for the next 6 weeks they fully booked. I am tired of this flare up I get every 3 months and being put on high dose of pain killers.I did some research and now referred myself by the gp to actual endo centre hospital. nsge.org.uk it gives you a list of all the local endo centre hospital near by. I gave 3 local ones to my gp and he managed to book me in for may. They said the whole referral and decision making is 10 weeks. Each endo centre has pelvis pain centre, fertility specialist unit and physio unit. So you will get all the support. I will be put on a surgery date quicker than a hospital that doesn't have a endo centre as you are put in a big waiting list under gynaecology with patients who have cervical,womb cancer. I will let you know how I get on my new referral in 4 weeks. Other than that I am now pain free since being discharged. I get the odd lower back pain and thigh pain which I used hot water bottle for. but I am not taking any pain killers. I feel now like I havent even got endo. but I know 2 months later in will get the flare up if I dont remove the cyst. I asked my gp to refer me for another scan so I can see what is happening down there.

[BrightLights88 in reply to BrightLights88]

sorry the site is called bsge.org.uk

[Tillyfloss in reply to BrightLights88]

hi. My cyst ruptured but couldn't be removed and then refilled within weeks of being drained and kept bleeding into its, it was awful I could be fine and then the pain would hit and my husband would have to call an ambulance as I passed out 🙉. The bsge centre I was treated at was brilliant, the specialist was honest but understanding and despite my surgery going awol he didn't bale and got as much as he could treated. That was in 2017, I knew last year I had another cyst so we did ivf and I'm now cyst free and 24 weeks pregnant. I hope you get the op date soon, I felt so much relief once the cysts were out. Do you follow the Endo diet? Xx

[BrightLights88 in reply to Tillyfloss]

Congratulations first of all, reading that news gives me hope that I too one day can become a mother. I'm 30. First flare up they thought it ruptured but it didnt. Now every 3months I come down with agonising pain. I think it's also to do with the tricycle pill plan. I was told to take it 3months then have a break 7days before the break I'm already in so much pelvis pain.

I havent heard about the endo diet? I am going to have my first referral appointment in 3 weeks at a bsge centre. xx

[Tillyfloss in reply to BrightLights88]

hi. How are you doing? The Endo diet for me works well. I did it very strictly for 6 weeks and then introduced things one at a time to see what upset my system. If you google it various things come up, we got a book in the end which I can't remember it's tittle but if you want I can check. For me I can't tolerate much bread, cake etc, it really sets it off, but I'm fine dairy. I avoid citrus fruit and juices as that flares it as well. Have you had scans? Xx

[BrightLights88 in reply to Tillyfloss]

Hiya, I have been well so far for 2 weeks. Normally is the case after being discharged in a weekz stay at the hospital with morphine painkillers. I have just recently taken out bread in my eating as I noticed I have gained a lot of weight on my thighs. The doctor said it may be caused from the microgynon pill I'm on. But I have taken these before and not gained weight.

I havent had any more scans since december, but will hopefully get one done on the 14th may which is my appointment at the new hospital I referred myself to which specialises in endometriosis.

Thank you I will look into that online. My dietician told me that I shouldn't really need to change my diet but to put in more fibre and protein. I told her the hospital told me to not eat anything dairy because they said endometriosis is a inflammatory condition the more dairy I eat the more cyst will grow. but I wasnt too sure who to go by. But my dietician said it's not, and I shouldn't take out dairy unless it I'm intolerant to it which I'm not.

I start my 30 day religious fasting next week so this may give me a chance to start up the endo diet.

Thanks for the recommendation I will Google it now. x

[Tillyfloss in reply to BrightLights88]

hi. How are you doing? The bsge specialist im under did explain as an inflammatory disease which the more you irritate through certain medication and diet the worse it can become. I found the things that irritated me and I avoid them and it's reduced the pain massively, I know when I've eaten something I shouldn't 🙉. Hope you're appointment goes well on the 14th. Xx

[BrightLights88 in reply to Tillyfloss]

Hi, so far no pain but that is due to already having a flare up 3 weeks ago. I have cut down my dairy intake and seeing how it I go. Thank you my appointment is approaching soon and I just hope it goes all well and they can call me back in for a surgery date soon. It's coming into a year now that I been diagnosed. x

[BrightLights88 in reply to Tillyfloss]

I got called from my current hospital only for them to tell me it was my surgery date today?? because I missed their call they cancelled my surgery. But that doesn't matter now as I will have my first consultation with the new referral next week.

[Tillyfloss in reply to BrightLights88]

hi. That's really frustrating but you might better having surgery with the consultant you seeing next week. How is the pain? Xx

[BrightLights88 in reply to Tillyfloss]

Yes I am definitely going to have my surgery done by the my second referral place as my first hospital messed me up, for my pre op assessment date went in only to find out they accidentally discharged me then I had to wait 2 hours for them to put me back in the system. Now this, missing my surgery date. I have my consultation tomorrow with my new referral fingers cross they can get this initial assessment smoothly. Pain wise right now I am fine, as I am also doing my religious 30 days of fast and was little worried this might trigger my endo but it didnt. My flare up was in March till April. so I am ok for now till end of June when. it will flare up again. x

[Hidden]

So glad I found this post. I always get tricked that I’m feeling better and I’ve got a hold on my endo until the dreaded three month mark! Does anyone know why? I do not take the pill. I’ve never been hospitalised but I’m off work every three months without fail!

[BrightLights88 in reply to Hidden]

Hi

yes I get this. been hospitalised 7 times since September 2018. The doctor has said it's due to the hormone irritating the endometriosis. I have started to take evening primrose capsules so far its going well. The evening primrose oil is meant to help with balancing the hormone. My last flare up was March. so far not had any pain. I recommend purchase the 2000iu or 1000iu of evening primrose oil from Holland and barrett. x

[Hidden in reply to BrightLights88]

Thank you! I do take evening primrose but perhaps I need a higher dose. Xx