How does your Endo pain feel?

[0Jasmine]

Hi, I just wanted to know what other people’s descriptions are of endo pain. I’m still under investigation. My pain ranges but feels like pressure in my pelvis, sharp pains almost like what wind would feel like if it was in your pelvis and it can’t be released. I was hoping someone could share their experiences of pain to see if mine compares? Thank you

[Sarahbarrett]

My pain is in my pelvis and my back it’s like a knife sometimes and then cramping it makes me so tired and I getting bleeding between my periods

[0Jasmine in reply to Sarahbarrett]

Thank you for your reply. Mines similar like stabbing sharp pains. Does anything help your pain? How long have you had it for?

[EndoSuckss]

Like my womb is on fire! 😂

[LouiseC83]

Mine has been impacting my digestion so a flare up would be massive spasms of pain through my upper abdomen and intense nausea. I'd get stabbing pains in my right lower back and left ovary throughout the month as well

[Poppyandnoodle in reply to LouiseC83]

My daughters GP keeps telling her they (digestion feelings and endo feelings) can’t be related and take more Buscopan. He’s so useless.

[LouiseC83 in reply to Poppyandnoodle]

My upper intestine was stuck to the lining of my abdomen wall. That's why I was having digestion issues 🙄 My consultant also said the chemicals from endo releasing is what makes me feel sick. Buscopan did absolutely naff all to contain my pain and symptoms. Also tried mebeverine which was useless because my spasms weren't bowel related

[0Jasmine]

Mine all started with my right ovary, felt like ovulation pain but much worse then seemed to spread across my pelvis. Have you had a laparoscopy?

[Cookie2810]

I would get really sharp stabbing pains across my lower stomach, lower back pain, would need to go to the toilet because the cramping was so bad. Couldn't stand up for a long amount of time at the start of my period or I'd start going dizzy and nearly blacking out. I didn't know what it was at the time and was just put on the pill 🙄. My mum compared her pain as like contractions!! I started having investigations but am now pregnant. Sadly my sister had it much worse and has had a laparoscopy. She was in so much pain she'd be sick every month and had a constant pain in one side of her. Hope this helps. X

[Cookie2810]

Just wanted to also add that everyone is different. I read on the endemetriosis charity site that you could have no pain at all and have severe endo without even knowing which is scary, or have lots of pain and not have it really badly. Such a shame it takes so long for doctors to diagnose

[Cacti123]

I have pain deep in the base of my spine pain that radiates down the back of both of my legs cramps so bad they’re like labour pain and the whole of my back is sweating and cramps associated before and after a bowel movement when it flares up I find it difficult to stand or walk for any length of time bending over is impossible all I can do is lie in bed and take max strength co codamol and a bath as hot as I can take it gives a bit of relief for about half an hour. When people say exercise helps well that’s certainly not going to happen if I can’t even walk. It’s totally debilitating and I’m desperate for a hysterectomy and oorectomy. I spoke to the Gynaecologist and said I cannot function like this for much longer it’s ruining my quality of life and care of my daughter my son has already moved out to his dads. How it impacts my life is very depressing.

[0Jasmine in reply to Cacti123]

Hi, sorry to hear it’s been so horrendous for you. Have you had a laparoscopy? What medication helps you? X

[Cacti123 in reply to 0Jasmine]

I was on prostap which really helped as it put me into the menopause but now it’s worn off now so I take 500/30 mg of co codamol but really nothing gets rid of the pain entirely

Yes I had a laparoscopy a few years ago and they lasored off a load of scar tissue from around my pouch of Douglas on my bowel but all the symptoms have returned

[Littlebug77]

I relate to you every month I end up on morphine because of the pain. Please push through to see a gyno keep complaining keep calling the gp. We dheojkdnt be living like this

[Littlebug77]

Mine is a constant cramping feeling with pressure. It feels like two trucks are crashing into me. The pain is my back and generalised all over my stomach. It goes to the back of my legs as well. I’m in bed because it’s unbearable and always have to be on morphine in hospital when. It makes me light headed and vomit. That is the physical aspects never mind the mental health side I am behind at uni having to miss my part time job which is hard because I have to pay rent. Hope you feel better soon much love

[0Jasmine in reply to Littlebug77]

Hi, thanks for your reply and sorry to hear it’s been horrendous for you. It really does effect quality of life! How far are you with diagnosis/laparoscopy? X

[Littlebug77 in reply to 0Jasmine]

I am finally seeing a gyno today actually. Took over a year and a half I can’t get any surgery I am too young and the ricks are too much because of my other conditions so I will need to wait until after I’ve as children etc sad time I hope you are well

[Justine89]

I get pains a week before my period I get pelvic pain, sever back pain and stabbing pains around my hips, sometimes pain goes down my leg (all on right side) this lasts until around a week after my periods. Also struggle with bowel movements live on laxatives. Have just been diagnosed with sever endometriosis which is also around my bowels.

[0Jasmine in reply to Justine89]

Hi thanks for your reply and sorry to hear it’s also been horrendous for you. How long did it take from onset to diagnosis? X

[Justine89 in reply to 0Jasmine]

So I got referred from the gp last September took along time for the gynaecologist maybe because of Covid I saw them in 4th June. She then put me on the waiting list for laparoscopy I had a pre assessment don’t in 2nd august then surgery was 14th October. I got the phone call a week before surgery so that happened all very quickly. Now I just have to wait for the specialist which they said they have no idea how long it could take. Xx

[Bleeding-Soul]

Mine right now feels like my lower abdomen is inflamed. Like its not quite sharp but it really just feels like everything is angry and inflamed but this has been since I started my medication. Before it was worse and very sharp and would last hours

[0Jasmine in reply to Bleeding-Soul]

Hi thanks for your reply and sorry to hear it’s also been horrendous for you. What medication helps you? X

[Bleeding-Soul in reply to 0Jasmine]

Hey so I had a period that lasted 50 days and was put on utovlan, which is norethestirone 5mg,that stopped the period. But I just continued to take it and months later I refuse to stop taking it as it’s given me my life back. I used to miss uni and school because of the intense pain, vomiting, nausea and diarrhoea associated with my period. Now I don’t have a period and the symptoms are very manageable but I have to take one tablet once a day. But I have to say this was not recommended by my gynaecologist or my doctor and I really do feel it’s masking the problem not fixing it but at least I can control my life instead of my period ruining it.

[Bleeding-Soul in reply to Bleeding-Soul]

Also the pain i described initially is more a sign that my medication is wearing off. The person below described what my normal period felt like minus the back pain.

[vizzle_01]

I have lower back pain (like a nagging throbbing type) 10/11 days before my period. 4/5 days before my period I start getting cramps in my lower abdomen. When my period starts I get increasing stomach pains that make me not be able to stay still if I'm laying down (I'm just writhing around) the pain radiates down my legs and I get a sciatica type shooting pain in my right buttock down my leg. I get a horrible shooting pain in my rectum/anus (I'm not sure!) with bowel movements during the first day of my period because usually I'm constipated but then it goes to diarrhea pretty quick (I can go up to 5/6 times during a day at that point). After my period during ovulation I get right sided colicky type pain next to my hip bone (inner part) and have had before (not every month) a stabbing pain there that stops me in my tracks and lower back with ovulation.

[0Jasmine in reply to vizzle_01]

Hi thanks for your reply and sorry to hear it’s horrendous for you too. What medication do you find helps? How long have you had endo for? X

[Ccia]

I have a constant dull ache in lower left abdomen which also travels to my back. Gets really bad when im on my period, have to be on medication during it otherwise im a mess!

[0Jasmine in reply to Ccia]

Hi thanks for your reply and sorry to hear it’s so bad for you too. What medication are you on? X

[Ronsk]

Hi,

I get stabbing pains up my rectum and into my vagina.also during my period I get a really dull ache in my back and pelvis and down my legs which makes me feel like I'm going to pass out . It's almost like a dragging sensation in my lower back and I need to sit on a hot water bottle. and feel like my vagina is going to fall out. Regularly get ovarian pain as I have endo cysts. Very descriptive I know but its horrendous.

[0Jasmine in reply to Ronsk]

Hi, thanks for your reply. I’ve had shooting pains into my rectum too and pain ranges from ache to sharp inflamed feeling or pulling down feeling. It is horrendous. Are you on any medication that helps? Have you had a laparoscopy? X

[Ronsk in reply to 0Jasmine]

Hi, I currently take cocodamol 30/500 daily, naproxin if I need to.i take tramadol during my period with naproxin.im not long off the grnh monologue so I'm anticipating the pain will increase as b4. I've had 3 laps in the past.

[MrsMarlene]

Mine is a stabbing burn in my left lower abdomen (constant recurring ovary cysts), hot irritating nerve pain in my left upper leg and weakness, a feeling of all my organs being too big for my body so feel in the wrong places inside me and swollen which feels restrictive when sitting upright and feels like barbed wire sticking into me and restricting my abdominal movements, shooting pains within my vagina and rectum like im sitting on a spike, daily nausea and GI upset every morning, also breathlessness and dizziness from monthly pleuritic chest pains which start as a burning pressure and become stabbing which also causes shoulder weakness and pain. I also struggle with fatigue and brain fog from the constant drain of living in this amount of pain.

I have severe endometriosis, adenomyosis and suspected thoracic endo.

[Vps1980 in reply to MrsMarlene]

Hi, have you had any treatment? I get severe right sided chest and rib pain x

[MrsMarlene in reply to Vps1980]

Not yet. I was first diagnosed right at the beginning of the Covid pandemic and put on what seems like never ending waiting list! My GP presribes me Tramadol 50mg each month, the mini pill and I take Serrapeptase every morning which has helped reduce the severity of my pain at times. I'm in the middle of organising private treatment as I can't manage on my own anymore with only painkillers. I now get monthly chest pain for about a week, which feels like a burning pressure or at times intense stabbing. At the same time I get right shoulder aching and weakness.

[Vps1980 in reply to MrsMarlene]

Exactly same symptoms as me wow, my pain is pretty constant now as my periods are only 18 days apart, I have fibroids, spoke to gyno who won’t do anything until I’ve taken the mini pill for 6 months, can barely breath with chest pain etc, what meds help the pain? Sorry to bug you x

[MrsMarlene in reply to Vps1980]

Tramadol 50mg for severe pain alongside Paracetamol. I also take Serrapeptase which I buy from Holland and Barratt which helps reduce pain and removes dead cells and cysts. My GPs happy for me taking this too. Please have a look and see if it can help you.

CBD oil has also helped in the past although I can't afford to buy it all the time and probably not at the strength I need.

Feel free to message me xx

[Vps1980 in reply to MrsMarlene]

Thank you lovely I will look into that 😊 I’ve just come off cocodamol as been on it 10 years and I’m now in agony, you feel free to message me too, it’s great knowing I’m not the only one with these symptoms. They’ve also found a nodule in my lung,breast and thyroid xx

[MrsMarlene in reply to Vps1980]

What treatment have you had so far? And what have you got planned? I'm arranging private treatment as I can't stand having to live with this level of pain. Hopefully I've found a good specialist this time as the last one I saw was unsympathetic and wouldn't listen to me about how much this condition has effected my life. All I wanted was a little hope and support from someone who apparrently deals with women with this condition day in day out, but he had a complete lack of empathy. I really didnt expect that.

[Vps1980 in reply to MrsMarlene]

Oh bless you, ive had no treatment so far, had to wait 10 months for a telephone consultation only to be told to take the mini pill and they would ring back in 6 months xx

[MrsMarlene in reply to Vps1980]

Thats terrible! You poor thing. I hope you can get something sorted soon. xx

[Vps1980 in reply to MrsMarlene]

Thank you lovely, please keep me updated how you’re getting on ❤️ Xx

[MooMoolo22]

Hi Jasmine, agree with everything you are experiencing, stabby pains, pressure that I can only compare to my last few months of pregnancy, all my digestion is crazy so I limit my diet a lot, anything sugary or dairy or wheat based I no longer really fancy to eat as it causes so many pains and nausea. one night I was in so much pain I was googling to see if an appendix can grow back as mine was removed years earlier! It can’t and I knew I would need to talk to someone to get it looked into. It’s a long process. Take care wishing you all the best x

[Bigsize9foot]

I feel so lucky that I haven’t had the horrendous pain a lot of you describe.

I would say mine is like constant period pain in lower back and lower abdomen. More recently it feels like a tugging or tightness.

Mid cycle I occasionally have the most awful stabbing pain on my left side which was so bad I could not stand or walk but randomly after a couple of paracetomal it would disappear. I also have been getting that far less regularly.

Let month I had UTI symptoms which were awful and lost me 2 days sleep but touch wood I’ve not had that again.

My lap is a week on Wednesday.

[0Jasmine in reply to Bigsize9foot]

Hi thanks for your reply. I’m glad to hear your symptoms have been manageable, it seems like everyone experiences it so differently. I’ve had a couple issues with UTI’s too, they’re not nice and wipe you out. Good luck with your lap tomorrow. Was your lap on the NHS and how long did you need to wait for yours? X

[Bigsize9foot]

Thanks- it’s a week tomorrow. It’s private. I’ve waited about 2 months from my first consultation to getting the surgery which I know is really privileged and I should be grateful. It would have been even quicker but my consultant was on holiday. I hope you get some action soon.

[0Jasmine in reply to Bigsize9foot]

It’s definitely worth going private if you can! I just can’t afford it unfortunately. Hope you get some answers and feel relief very quickly! Take care