Is anyone's endo pain constant as soon as they start moving ? Help

I am 42 and have just out of the blue started to get awful pain in my groin and tummy area I went to a and e and they kept me in for 4 days controlling the pain (let me out Xmas eve) it is suspected endo . The pain is constant even through the pain killers and like you I can't go shopping , plan any nights out holidays etc X I have three kids I am struggling to do everybdaybhings with them . I am seeing a gynaelcology next week who has said possible lasporoscopy needed.

Does this sound like there pain you have ? I could doc out my ovaries , how is your pain now ? And is your pain constantly their 24/7?

Thanks

3 Replies

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  • In the case of endo this sort of constant pain would usually be caused by adhesions (scar tissue) that are sticking structures together which then pull when you move. Until such adhesions are removed then you surely can get constant pain. But as this has come on very suddenly and they kept you in for 4 days did they do scans to rule anything else out? If endo is suspected then you should push for a lap. If it turns out that you do have it be aware that we have specialist centres - click on my name and have a look at my post on how to find one. x

  • Thanks so much for your really helpful reply Lindle. I have just re read my post and I did it from my phone and it doesn't make much sense or give much history

    Basically, When ever since I started my periods (I am now 42) I had chronic period pains, used to take 4 nurofen or feminax at a time which didn't help, rolled around in the toilets at work , took time off etc etc. This was miraculously cured when I had my first child aged 31 which I understand is classic end symptons?

    Fast forward 11 years, 3 kids later(I am blessed I know) (and a c-section 3 yea, rs ago), I had a hysterscopy 8 weeks ago, I bled a lot from that and had pain for longer than what is normal, however the pain did become mild after a couple of weeks. However, 3 weeks ago, the tugging sensation in my groin and tummy area became gradually worse and worse to the point where I can't go to the shops and eventually ended up in A and E. I had two lots of antibiotics UTI and now water sample is showing up as clear so they have ruled that out.

    They kept me in hospital to control the pain for 4 days up until xmas eve, on xmas day I got my period, the pain is less now although I am still limited in what i can do and am creeping around

    the pain is tight in my groin whenever I try and do too much and is constantly there.

    You suggested adhesions which sounds about right to me, the hospital said it was suspected endo and suggested a laparoscopy, which I am worried about as I have read the recovery is 5 weeks,

    I am struggling to look after my 3 young children and am dreading my husband going back to work next week and back to the school run and clubs etc.

    We are meant to be in Cenrte Parcs at the moment, but had to cancel it because of my pain. They have ruled out ectopic pregnancy.

    Does this sound like end to you? - It just seems strange to me how it came on three weeks ago following an op?

    I have read that it can be re triggered by surgery but more likely a c section or something major?

    So my question is :

    I just wondered if anyone else had constant groin pain that worsenes before their period.

    Im so upset that I now cant go to the shops, take my kids to football, netball, etc,

    I am due to see what I think is a good conulstnant Monday (Dr El Farra) but am now wondering whether to see one of the end centre you suggested?

    Sorry for such long message, I just wondered if anyone can relate to this constant pain and if so how do they cope with work and kids etc?

    thanks so much

    Faye

  • Hi Faye and thanks for all that detail.

    In considering a possibility of endo in a woman of any age then heavy, clotty, painful periods would usually be a first sign. But because periods are so personal we really have no reference to what is 'normal' The very mechanics of a period mean that the uterus contracts to expel its contents and this will necessarily cause some discomfort so most of us just take what comes as normal. But ultimately it is not normal to be incapacitated by pain with a period despite so many GPs being happy for a woman to be rolling around in agony as part of her lot. From a hormonal perspective pregnancy does give respite from endo as the oestrogen that drives it (and the menstrual cycle generally) is called oestradiol and this takes a back seat in pregnancy as the estrone form of oestrogen takes over. We don't know yet if you do have endo, but if you do then having punctuated the last decade with pregnancies will have kept its progression slow and it sounds like it has now revealed itself.

    The pain you describe does sound like adhesions and it may just be coincidence that these have started a few weeks after the hysteroscopy. You had that because you were aware of something being wrong and adhesions would be part of endo and it may be that they just happen to have started giving problems. A C section can in itself give rise to adhesions but without ongoing inflammation from such as endo I'm not sure they would take 3 years to cause pain as once they had formed you would expect that to be it. There are a couple of papers published that suggest c section as a risk factor for endo developing but I personally don't agree with this. Endo is proven to be immune related and my view would be that those with undiagnosed endo may be more likely to need c sections because of aberrant hormone activity perhaps interfering with normal delivery. But this is something we can't know.

    The endometrium of women with endo has been found to contain higher levels of nerve fibres than that of healthy women which is thought likely to contribute to painful periods. Before a period there is a sudden withdrawal of progesterone that triggers the endometrium to break down. Progesterone is a protective hormone against the release of inflammatory prostaglandins which are then suddenly released to bring about the familiar inflammation and pain of a period and endo. The actual start of the period represents the point at which the endometrium has broken down but it seems likely that there will be an interval just before you see your period when all this inflammation and nerve fibre activity kicks in as the endometrium changes. I think this is what will be the cause of pain just before a period and would be intensified in the presence of endo.

    No one can predict how long recovery from a lap would be as it depends what is involved, but certainly the way in which the lap is done is critical. A skilled specialist will work more precisely than most general gynaecologists and should cause less tissue damage all of which would aim a speedy recovery. Also, crucially, a specialist would excise any endo rather than ablate (burn) it and at your age as you see menopause on the horizon I think your aim should be to get the best possible job done to set yourself up for entering that stage of your life with just one good surgery. Until you have surgery you will need to ask for help from anyone you have around to help you cope and don't be afraid to. You have devoted yourself to your family and children and now it is your time to think of yourself too and look to a pain free future which you can only do by sharing what you are going through with those around you. As mothers this goes against our instincts but you need to ask for and accept support.

    From the consultant you mention it seems you are in England and so have access to anyone you want. It will be important that the surgeon you see has undertaken advanced excision training via the RCOG training programme or training by recognised experts underpinned by years of experience, and such surgeons will usually only be found in the specialist centres. x

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