I'm having surgery next month to confirm if my symptoms are indeed caused by endo. I don't know if it is just me but I've been having these horrible dreams where they perform the surgery and don't find any sign of endo, or I'm at a gynaecologist appointment and the doctor doesn't believe my pain and just prescribes paracetamol and says that everything is in my head. - I'm currently on Dihydrocodeine - but this takes like 2 hours to have some effect and makes me even more nauseous sometimes.
I ended up in A&E last year because I was in so much pain (for more than 12 hours straight and at the time because I was diagnosed a couple of years ago with IBS I was managing my pain with IBS relief capsules so yeah it was doing nothing) that I fainted. They suspected appendicitis but the results came back normal apart from some inflammation they spotted in my blood tests (but didn't explain what was causing this pain!). It was there, at the hospital, that the doctor said that I probably have endometriosis since the pain was really bad around the same time each month - during ovulation, during and sometimes after my period.
PS: 10 years ago I had a uterine polyp removed so I've always had issues of this kind. Heavy and painful periods since I was 14/15 but after removing the polyp it helped a little and, of course, the pill. However, a couple of years ago I started having really bad periods again, and irregular in the sense of being heavy but also light sometimes.
After being discharged, I booked an appointment with a gynae via NHS who suggested that I tried the Mirena coil - which I did back in November 2020 - but it's been 9 months and I've been having my period every single month, still suffer from really bad periods - awful amounts of pain, really sharp to the point where I can't move when the cramps show up. And on top of that sex is almost impossible, really painful, migraines, insomnia, really bad nausea., bloating... you name it. So it didn't make any difference in my life. This is also starting to affect my left leg - when I'm on my period it basically hurts and I have this tingling and really annoying sensation.
I'm at the point where I need to plan my life in advance because I know that around my period I'll not be in a good place. Can't do shit. Physically and mentally. So the coil didn't change a thing and I'm having it removed during surgery.
But I'm so afraid that they will not find endo - even if this is horrible to say but I'm so tired and getting really depressed so I just want answers. I don't know if any of you experienced this feeling before surgery - feeling that this is all in your head, doubting yourself because it can't be possible being in so much pain every single month and sometimes without any notice (like I can wake up feeling fine, like a normal person, but by the end of the day I feel like crap because I'm in pain and can't do anything). And I'm also at the point that being in pain is my real self that when I'm not in pain and feel happy and 'normal' I feel also guilty... it's a stupid feeling and I can't even explain it. Nonsense, but yeah...
Sorry for the long post. I just needed to express my feelings right now.
Thank you xx
I'm sending lots of love to all of you that are currently going through this. xx
Written by
Loverretro
To view profiles and participate in discussions please or .
Hi sweetie, first of all you're not crazy and this is not in your head. Pain is a warning that something is wrong, just because they don't have tests they can do to find endo more simply does not mean that there's nothing there. They wouldn't want to bother doing the surgery if they didn't think something could be there sweetie, look how long those waiting lists are. Take a deep breath and remember they wouldn't add names to it unnecessarily, because it would add pressure to the NHS. So if you're on there it's because you need to be. Don't worry too much! A lady I speak to had hers recently and every single test came back clear, but the lap found it!
Pain wise are you trying anything other than painkillers to help? I'm on dihydrocodeine too, it is a devil because it doesn't help that much but if I don't have it I'm bed ridden...so yeah. I also use heat as a relief, any kind! I have a heated pad that is always plugged in, that's good for my back I have 2 hot water bottles, one small and one long one. Hot baths can be fab, if you have access to one. Also TENS machines can be useful as a distraction. You could also look at diet changes, supplements and probiotics, CBD oil etc. BeYou patches also have a good rep!
Please don't think you're crazy, and never feel guilty for a good or a bad day. You didn't ask for this love, you're just doing the best you can to live with it. So never feel guilty or silly or like you're ranting, we all understand how you feel and this is a safe space to vent. Xxx
Thank you so much for your lovely words! Yes, I rely on dihydro to manage the pain chemically because honestly, it was really a traumatic experience last year when I fainted - because I have 'small' seizures every time I faint and luckily my partner, who's a nurse, wasn't working that night so he managed to grab me but for a couple of seconds I didn't respond at all and he was scared - so having the dihydro makes me less anxious if you know what I mean but I also have a heating pad and a hot water bottle that I swear by! They are my best friends during a flare-up. Regarding diet, I try my best to have as much as lactose-free products because of my IBS... So yeah, I also tried exercising regularly but I feel like it triggers my symptoms. Even walking for too long sometimes. But I'll get there!
I've been reading about the TENS machine. Is it worth it?
I'm on pregabalin, Dihdrocodine and butrans patches, I'm smoking cannabis, as well as using cbd oil and devil's claw (a natural anti inflammatory) if I'm honest since I started smoking cannabis my dihdrocodine intake has reduced massively, I only use it when nothing else works and also means that I don't build up a tolerance to it, it took getting sepsis to wean off it first like 😂 I wouldn't suggest it 😂 xxxx
Tens is a good distraction, its a bit like with heat to be honest...nothing works 100% but it is better than nothing if that makes sense. I got myself a cheap one first to try it out that way if I didn't like it I wasn't spending too much it's helped me a fair bit but we're all different so it's best to just try things and see what helps xxx
I have tried ten's was ace through pregnancy but I have been putting in the place the hospital showed me but tbh it causes me agonising spasms 😂 I'm ment to sit with it on for 2 hrs 😂 🤣 🤣 how?! I've messed around with the settings also the placements of the pads and tried it at different times of my cycle but the outcome is usually the same xxxx
hi hun how's u doing today 🙂 I'm so sorry to hear that ur suffering listen to cry baby ur not crazy and it's not in ur head but Dr's have a habit of not listening to you! me and crybaby understand what ur going through and if you eva wanna chat plz let us know xxx
I really hope you get some definitive answers from your lap. I remember those dreams well - we're so disbelieved, as women sometimes, it's no wonder that even our dreams put us in the same position.
I, unfortunately, came away from my lap back onto square one. Felt really low after, hearing the results but a lot of that was initial shock & medication, so I'm a lot more level headed now & planning what to say & how to go about things with the consultants this weekend.
The only physical reason for all my pains seems point towards my very tilted uterus & cervix (it's always painful to touch, tampons are a no no) but there's little to no research & corrective surgery often exacerbates the problem or outright fails 🤷🏻♀️
Just a question for you, has that "sharp" feeling & left leg pain & tingling only started to happen since you had the mirena fitted?
I had my first mirena fitted on 2nd July, during my diagnostic laparoscopy, so it hasn't been long. But since then, whenever I get cramping, it's that sharp, deep pain, like a screwdriver in my lower left abdomen, that radiates straight through to a specific point in my lower back & also travels down my left leg... It's been on the right hand side just once or twice.
I was told to expect cramping & irregular bleeding etc. but it's been that bad that it's the reason I'm seeing a consultant on Sunday afternoon. I guess it feels like my uterus is literally squeezing the handles of the coil & they feel sharp. On top of that, my bowels have been quite unpredictable since the mirena insertion.
Might be worth mentioning the sharpness - I believe there are smaller coils that last 3 years? Might be more suitable for a sensitive uterus? I'm not a medic though, so you'll have to ask the questions.
Anyhow, that was a huge reply (sorry), let us know how you get on xx
What other symptoms did you have to make you suspect endo?
I had a uterine polyp removed 10 years ago and they never said a thing about my uterus but yeah who knows 🤷♀️
I’m trying to prepare myself mentally for the possible outcome of this surgery - not having endo and that’ll mean like you said back to square one but I need to chill and relax. It’s not easy though.
The leg situation - I’ve had episodes before of feeling this tingling sensation down my legs, and even pain sometimes, especially the left one because there’s where I usually experience more pain (left lower side of my abdomen) but it sometimes affects my right side too, it depends really.
So I can’t say for sure that the coil is the culprit. It’s “funny” you mentioned tampons because I’ve always used them but for the last almost 2 years I’ve been using more pads because it gets extremely uncomfortable after not too long after putting tampons, which is strange. I never mentioned this to the doctors because like with everything else I thought it was kind of normal.
The Mirena coil isn’t working for me. It didn’t help at all - it even worsened my symptoms so I’m having it removed during surgery.
I’ll let you know after surgery the result. I’m nervous but I need to relax especially because stress is a big trigger.
Sorry it's been a long time getting back to you - last 2 weeks of summer holidays with the kids have been absolutely crazy & I'm only just getting back on track now 😬
Have you had your lap yet?
You asked what my symptoms were (besides the sharp pain & tingling) that made me suspect endo, so here's a quick list before I jet off on the school run 😅
Disabling ovulation pains that build for about 3 days, peak for most of a day or night, then wind down for 2-3 days (I literally can't sit down down without it feeling like there's a hot poker stuck inside my ovary/ies
Very painful periods
Huge bloating that makes me look pregnant
Unexplained but milder cramping throughout the month
Cramping that travels down my legs, through abdomen & lower back
Feeling of pressure, generally, in my lower abdomen, especially during period & ovulation
Urge to empty my bowels when I already have - especially in period & ovulation times
I think that's everything but probably missed things 🤔
Oh...i had the same thoughts as you before i had the surgery...i was so desperate in finding out, to finally have a diagnose or a name for this that i was actually prying that they will find it...i know its sounds crazy! But in the same time it did not made much of a difference in terms of pain etc...but at least i no longer hear stories as you crazy, is all in your head...don't know what you have, or some mysterious illness...
Exactly! And the issue is that i'm at this point where I kind of start to doubt myself when I have normal days because I'm so used to being in pain for basically 2 weeks in 4. So yeah. It's not easy but I'll find the right balance.
Yep i know and is normal to feel this way. Its starts gradually, first the pain is on your period, then before and during the period, after that starts at ovulation as well and before you know it is there all the time plus other problems like bladder, bowels etc, even when i sneeze or cough it hurts. Its like everything is shutting down one by one...and there isn't much you can do about it, i personally tried everything..you name and i already did it. I do hope that the laparoscopy it will at least ease some of your pain because it did not worked for me..if anything blew everything up, i mean before the lap the pain was bad...and when i say bad is that pain that you cannot even breath because of it how painful it can be, but WOW after the lap the pain is just out of this world...
I'm sorry to hear that. First, I need to be sure that I have endo. And then work from there. At this point, I have pain during ovulation, before and during my period. There are months where the pain is even worse 2 days after the end of my period. But for a couple of days/2 weeks, I'm alright. Might experience bloating and a couple of cramps here and there but more manageable. So yeah, it's fucked up (pardon my french!). I'm sure something is not right because I know that this pain is not normal. So yeah, it's a long journey and i just hope to have some answers by the end of next month.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I have 2 hot water bottles, one small and one long one. Hot baths can be fab, if you have access to one. Also TENS machines can be useful as a distraction. You could also look at diet changes, supplements and probiotics, CBD oil etc. BeYou patches also have a good rep! 
New and in pain following surgery
Stage 4 surgery questions
I had surgery yesterday
Can you be too underweight for surgery?
endometriosis surgery
