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Endometriosis UK
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Pain has got to a new height

Hi everyone,

I've been struggling this week with pain in my lower back, pelvis and bum during the night, when it's got bad (I have stopped taking my pill on Thursday for the week break and should get my period today. So most of the week my day has started at about 3.30am as I then struggle to get anymore sleep due to pain. Heat pad helps and I take cocodamol too.

But OMG, I woke at 4.30am this morning to go to the toilet and it's excruciating. All over my lower back, in my hips, in my bum, pelvis, down my legs to my knees and at times all way down to feet. Not been back to sleep and although the cocodamol I took at 4.30 helped ease it slightly I now need more but can't take any yet. Currently sitting down on the sofa with my head pad.

Can also feel the pain in my public area and across the front of my stomach. I'm assuming it's all to do with my period coming, but what it is this is the worst it's ever been. Even said to my husband that he might have to help me get out of bed. I'm walking like an old lady due to the pain.

Think it's going to be long day of being attached to the heat pad and watching the clock to take more pills.

Roll on the 20th May when I have my lap and I really hope they find endo and confirm adeno. At least then there's a reason for all this pain.


It's only 8am but I've already had enough of today!

Lisa x

4 Replies

Hi Lisa - I'm so sorry you are in so much pain. Click on my username and read my posts to see what you identify with and be aware that there are endo specialist centres. It sounds very much like adeno if it is mostly around your period but you are probably being seen by a general obstetrician and there is always a possibility that hidden endo can be missed. Always keep a symptom diary across your whole cycle so that you can monitor if things get worse of if new symptoms occur so that if you do need further treatment at some time your will be well equipped describe your history to an endo specialist. x


Hi Lindle,

Thank you for your reply. I am doing my research so I can say my consultant questions on the day of my op. POD is defiently an area I think I have it, along with on my bladder in some ways, as I have been having issues here for 18 mths. Scan showed nothing wrong with bladder. Today I have my period and although I went for several toilet trips this monring, I then spent an hour and half out with the kids thinking I was going to need to go again. But I realised that although I probably did need to go again and did when I got home, the sensations I was feeling was not exactly a fit to burst bladder, but more like pressure and feeling like something was pressing down on my bladder or making it feel full. Today I have pains deep in my bum, deep in hips, across pelvis and lower back, down my legs and across the pubic area, which also feels like it has pressure. Not as bad as the other night but I shall be taking cocodamol again shortly. Think there so also possible nerves involved as I get the sciatic pain like when I was pregnant and ended up have pelvic girdle pain (which until recently I did think all my pains were)

On researching my consultant he says he is a member of BGSE, and he was the one who mentioned adenomoysis when he did an internal as it felt all lumpy and I nearly jumped through the roof when he did the internal. Hoping he is better than a general gynae. But if it turns out that it is more complex then I wil be asking for a referral to a centre. I'm in Hertfordshire, so I think the nearest one to me would be london. I'm also prepared to need to have another lap, as this one might just be to have a look depending on what's going on.

i guess until I have the lap, it won't be known exactly where the endo is and if adeno is also suspected. I am also not going to have a mirena coil as advised. I was on cerazette and had spotting/bleeding pretty much constantly after 4 mths of nothing. Couldn't take it any longer after the frequency getting higher and just permanent PMS, so I stopped taking it after nearly 6 months of it. One symptom I don't really have is the heavy bleeding. Yes I bleed more than when I was one the pill pre children, but I only bleed now when I stop the combined pill for the week off and even then I'm not constantly changing sanitary. Think the bleeding is one symptom that is fairly normal for me. I will take the combined pill again, as after a horrible year will being ill, my mum suddenly passing and now this, I don't want to give myself new symptoms with the coil.

Hoping for answers and treatment when I have my lap, but aware that I might need further surgery depending on what they find. If I get we couldn't find anything, then I shall be asking my gp to refer me to a centre, as I just walnut think they were obviously experienced enough to find it.

Fingers crossed.



Hi Lisa - do you want to private message me the name of the gynae to check as endoscopy relates to all minimal access surgery and a gynae specialising in gynaecological cancer for example might be a member of the BSGE x


Hi Lindle,

That would be good. I will message you his details.

Considering I only went to the dr in march with my symptoms, stating I was sure they were linked to my cycle, I will have seen a consulant and had my lap within about 2 months. Which is really quick when I read how long others have waited. I guess this is the start of a long road.

Lisa x


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