No pattern to pain?

Hi all. 

Long story short, I'm waiting on a lap after a clear ultrasound but suffering with pain during deep sex, constant lower back and hip pain, shooting pains in groin and sometimes bleeding during sex. 

My pains recently have been daily, sometimes my back is the worst, usually my groin pain is terrible and travels into my leg. I also get a shooting pain just above the groin - I think this would be my ovary but not sure as it seems pretty low down? It's just above the crease where your groin begins and it's a sharp shooting pain that radiates into my groin. I've noticed that the past couple of days (despite tight chest, heart palpitations and shortness of breath which I think are caused by anxiety from all of the not knowing) I haven't had my usual pains and I'm due a period on Friday (but im taking my pill back to back this month so won't actually get one) I just wondered if anyone's symptoms get better closer to their expected period? So despite the period pains I get which aren't too severe, can the other back/hip/etc pains actually get better closer to menstruating? Just seems everyone's get worse but mine is near constant but slightly easing now I'm due on. 

Any help would be appreciated. 

Thanks X 

10 Replies

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  • I used to find a lot of my symptoms dissapeared once my period arrived. Not so much the case any more unfortunately. It was as if all the build up had been realeased or something. X

  • Hi, it sounds more like Adenomyosis to me rather than Endo. I had an ultrasound and neither showed, and then had two laps to remove endo, including a hystoscopy which showed nothing wrong with the inside of my uterus during my first lap and only endo on the outside which was excised. 

    4 month post lap I still have the pains you describe so I've recently had an MRI which showed a shadow in my uterus leading to Adeno diagnosis. There's fb groups for Adeno - take a look they go into symptoms a lot there, but back, hips, bum and legs is a common one due to the ligaments that hold the uterus in place referring the pain. Palpitations and breathless too. Pretty much everything you have when you're full term pregnant.

    So having had both, endo seems to hit more around your period and progresses slower from an earlier age. Adeno is all month, and my pains have got worse really quickly and is more common in the 35 to 50 group.

    Funny you should say they've eased off, I'm due on  this week (I think - irregular periods is another Adeno factor) and my tummy last night went soft and the pain has edged off slightly. I too was wondering if that was normal.

    I hope that helps ☺️. Enjoy your pain free day today.

    Hx

  • Hi girls, I was wondering the same too. I have usually got hip pain leg pain pain  on my right side most of the time but the last 2 months I've noticed they do tend to ware of when I'm on my period. I also have been getting a lot of pressure feeling like my insides are going to drop out. I've had a internal and ultra sound done just waiting for a follow up with my gyni doctor. I've even been refered to physio for my back problems because they didn't know what was going on either 😢 Hope you get there girls, take care xxx

  • Hi, thank you. I have read about it somewhere but I thought it was related to pregnancy somehow unless I'm wrong, plus I'm only 21 and have never been pregnant so is this still likely? X

  • Hi, i think it can still happen based on people I've seen on the Fb groups.  Do you have any clots in your period?

    It is really hard to distinguish between endo, Adeno and all the other conditions down there as to what is causing one symptom.

    I'm a bit of an Adeno warrior now as I've put up with it for months not knowing it existed just assuming it was still endo.

    Have a look around and if you think it relates speak to your doc. 

    Hx

  • Thanks for your informative replies. I get a lot of clotting usually! My ultrasounds and everything were clear so next stop is lap so hopefully things may become a bit clearer soon! X

  • Good luck 🍀

  • Hi - I replied to one of your very first posts and referred you to my posts on rectovaginal endo and how to find a specialist centre.

    You have classic symptoms of rectovaginal endo. The symptoms of adenomyosis can be very similar but this is unlikely at your age and you fit the perfect picture for rectovaginal endo that has been left to develop. In any event you need to be investigated for both.

    RV endo affects the area between the back of your cervix and the bowel, in a place called the pouch of douglas. Your abdominal cavity is lined with a thin membrane called the peritoneum and this forms a hollow there, hence the name 'pouch'. This is the most common site for endo yet the most commonly missed in general gynaecology. 

    There are four forms of endo that have been identified - 'peritoneal' that affects the peritoneum, 'ovarian' that refers to endometriomas or 'chocolate cysts' on the ovary, 'adenomyosis' which is endo within the uterus and deep nodular endo (DIE). Deep nodular endo almost exclusively affects the pouch of douglas, through which the uterosacral ligaments run. These are ligaments that attach the cervix to the sacrum (lower back). Along these ligaments run the nerves that serve the pelvis and nodules of endo will usually press on these nerves and cause referred pain to the lower back. The nerves enter the spine at the sacral plexis from where the sciatic nerve arises so pain will often be further referred to the buttock, thigh, hip and leg. These endo nodules are made up of endo within fibromuscular tissue that is not influenced by hormones, so pain is unrelated to periods and can be constant. The left is more commonly affected than the right due to the sigmoid colon entering the pelvis on the left, but the right US ligament can also be affected. 

    Endo is associated with scar tissue (adhesions) that can build up in the pouch of douglas to a point that it is no longer there - i.e. the pouch disappears because it is full of adhesions. This can be partial or complete and is called 'obliteration'. When this happens the back of the cervix becomes fixed to the rectum. This will usually cause severe pain with and/or after sex and it may be difficult to sit for any length of time. Endo here affecting the rectum will usually give rise to IBS symptoms, which would usually be worse at period time. The adhesions can glue other structures together such as the ovary to the rectum or to the pelvic side wall. When you move (e.g. turning over in bed) these adhesions can cause excruciating 'stabbing' or 'shooting' pains or they can be constant. As with the fibrous tissue of nodules, adhesions are not affected by hormones and so pain will not correlate with periods.

    Rectovaginal endo must only be dealt with in a specialist endo centre. This is a requirement of the Royal College of Gynaecology, with whom all gynaecologists are registered and whose standards they must all comply with. If your gynaecologist is baffled with your symptoms then she knows very little about endo. She should have immediately suspected deep endo and referred you to a specialist centre as soon as you described them. It is vital that she does not carry out the lap and especially important that she does not touch endo in that location as it is against regulations. When the pouch of douglas fills with adhesions as described above it is often taken as normal peritoneum by general gynaecologists as it can have the appearance of a false floor. Some don't even inspect the POD at all as it requires that the uterus is lifted in order to visualise it. In any event, if a general gynaecologist should attempt to tackle this complex scenario they could cause severe damage to the nerves or bowel. Nodules are sometimes outside the peritoneum altogether (retroperitoneal) in the space the runs between the back of the vagina and the rectum that ends at the perineum between the vagina and the anus. It would be rare to have endo that far down but it can certainly be found in the upper section. This causes pain with sex and rarely bleeding from the rectum and/or vagina. Endo here can't even be seen at a lap. 

    An ultrasound can sometimes pick up on nodules and denses adhesions if the anatomy has been distorted but this very much depends on the skill of the radiologist. 

    Obviously we don't know what is going on with you yet. You could have just one nodule causing all you symptoms with no peritoneal endo at all. In that case you would come away from a lap in general gynaecology being told that no endo was found. This happens to so many women who then go years with the disease progressing. It is vital that the person who looks inside you for the first time has the skills to know what to look for and to know what they are seeing. This form of endo is far beyond the realms of general gynaecology which is presumably why she is confused by your symptoms. They would also investigate the possibility of adenomyosis. Would you or your family have the funds to have a first private appointment (around £200) - you would be seen very quickly and would then refer to their NHS list for surgery?

    I would urge you to look again at my post on RV endo, how to find a specialist centre and the recent one describing the treatment pathway in the UK. x 

  • Thank you so much for this. I am seeing her again prior to my laparoscopy so I will mention this all to her and see what she says. I will look into this further in the meantime. X

  • Note that a general gynaecologist cannot tell you what to do. Referral to a centre can be by a GP. You must do your homework on this and take control of your treatment as the provisions are in place to get appropriate treatment. x 

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