Weird pains and totally confused :(

[Haych9]

Hey all.

Sorry to be really annoying, but I haven't yet been diagnosed with endo, just have an appointment with gyno scheduled.

My issue is, my symptoms have appeared quite suddenly, can this happen with endo, almost out of the blue like I didn't notice it and then suddenly presented itself over a few weeks - like it's gotten too much and the pain is now present?

My worst pain currently is my lower back aches constantly and I get shooting/stabbing aches and pains in my groin on both left and right side, they shoot suddenly and are really uncomfortable, why is this? They're either right in the groin or just above (but maybe too low to be my ovaries) the shooting pain sometimes goes into my thigh or into my hips. Is this normal? I also get a weird fragile feeling, like if I move or roll over from laying too fast it'll hurt, or if I strain or cough too hard almost like my lower abdomen is going to pop out or hurt! It's so strange to me, but is this normal, has anyone experienced those pains or the weird fragility before (I sometimes get it during my period where I feel fragile in lower abdomen/ovary area like if I strain they'll just explode!) I'm so confused and worried.

Thanks x

[Simo7]

Hi Haych9, sorry to hear of your pain. The standard for diagnosing endo is usually a laparoscopy, have you seen your GP or been referred to a gynaecologist? It may help to record your pain just jot down when it comes & in what places so you could see if there's a pattern related to your cycle. Wish you well x

[Haych9 in reply to Simo7]

Hey thanks for the reply. I've been referred to a gyno (appointment next Wednesday) by my GP after the pelvic ultrasound showed nothing but pelvic varicese and she mentioned that an ultrasound wouldn't show endo. She seems to think it may be endo presenting itself in an unusual way because it's come on pretty sudden almost like flare-ups after sex. I was worried as symptoms mimicked cervical cancer and other like sinister conditions, but after reading more on here I find I can relate to other people's symptoms and things so hopefully I'll get some answers next week! X

[Zan90]

Sounds very similar to my endo symptoms, I get the shooting pains all of a sudden and then a constant ache until all of a sudden the shooting pains are back and nothing helps not staying still not moving into a softens position nothing. When I cough or sneeze it feels like my ovaries are going to burst out. once you talk to Gynecology they should be able to help decide what's best, laparoscopy is the only way to properly diagnose. And once they know you have it they remove the adhesions.

Hope you get answers soon x

[Haych9 in reply to Zan90]

Thank you for taking the time to reply. It's really comforting knowing I'm not alone and it sounds like endo because I'm still quite clueless. Hopefully the gyno I see will move things forward. I just find my symptoms came on suddenly but maybe that's because it's getting worse and the pill is no longer masking it or something! I guess there's no explanation for how randomly symptoms have started but will soon see!! I hope you don't suffer too bad and wish you the best! I know how horrible the shooting pains and aches are, especially in horrible places like groin and hips! All the best xxx

[Zan90 in reply to Haych9]

I used to be on the pill and it really didn't help me at all with any of my symptoms to be honest. I had my second lap just over two years ago and had a mirena coil fitted at the same time. This has been the best and longest I've been without severe pain. Now it's starting to come back and I'm having appointments to see what to do next. I never wanted to have the coil because I have read so many bad things about it, Google is really not the best thing, I can honestly say though I'm so glad I listened to the gyne and had one fitted. I think after having a lap some type of hormones are needed to help control how quickly it may come back or how bad the symptoms are. Everyone reacts differently to different types of hormones though so it's just what works best for each individual I suppose.

Xx

[Haych9 in reply to Zan90]

I've been on the pill for about 4 years now, but only in the past month or so I've started to experience symptoms. I became really worried as the symptoms I googled just showed up for cervical cancer each time, but doctor doesn't seem too concerned after pelvic exam and internal ultrasound, just the inflamed veins showed in the scan. The right side groin pain almost seems worse when I lift my leg over to lay on my side almost like its squeezing on something, so I wonder if it's where I have inflammation somewhere, also I have slightly swollen nodes in my groin one on each side, but the groin pain is relatively new, only started quite bad the past week or two along with the hip ache! It's horrible!! xx

[Zan90 in reply to Haych9]

Inflammation is the worst because it takes so long to ease up or settle down, my pain is more around where the ovaries are, not in the groin as you say but there are so many symptoms for endo. Hopefully you will get some answers soon xx

[Haych9 in reply to Zan90]

Absolutely! Constant pain because there is just no opportunity for inflammation and irritated pelvic organs to calm down!! I also get them in my ovary region, well the space just above my groin as well as my groin, thinking if it's endo mine must be localised to that sort of region! Who knows! Hopefully answers soon!! Thank you so much for your replies xxx

[applebird]

Endo pain can appear 'out of the blue' according to where endometrial cells are proliferating at the time. During the month Endo builds up, growing under oestrogen hormonal stimulation, during the second half of the cycle it breaks down under the influence of progesterone, you bleed into the abdominal cavity as the blood has nowhere to go and this causes inflammation/scarring. At the beginning of your next cycle the implants of endometrial tissue in your abdomen are once more stimulated and start to grow. New implants can arise and the infiltration of Endo can increase as it builds up over time - this is probably why you're having more pain - due to new proliferation of cells (ie it's set up camp somewhere else, or grown more extensively in a certain area, or could just be affecting a nerve more hence you're feeling it).

The shooting pain is normal for Endo, as is the pulling pain. Endometrial growth outside of the womb can act like spider webs binding organs to the abdominal wall or to each other therefore you feel a tugging when you move sharply.

Just wait for the referral, read up all you can and try and implement some lifestyle changes that could really help you (see Endo resolved website). Unfortunately worrying is probably only going to make things worse - stress increases inflammatory mediators and makes Endo worse. Try and relax, take care of yourself, keep busy, learn about Endo and put your energy into positive action - there is plenty you can do whilst waiting. Xx

[Haych9 in reply to applebird]

Wow!! Amazing thank you so much for such an informative reply! That does make a lot of sense, my pain has increased the past few days and I finished my period last Wednesday so it seems right!? I'm trying to edict as myself through online endo sites and this forum for comfort just so I am a bit more in the know, so if my gyno doesn't mention it I can even bring it up myself. I thought the ultrasound would've showed some signs but apparently adhesions and endo doesn't show on it so perhaps a lap will be the next step!! Thanks again, I really do appreciate your reply for both peace of mind and knowledge. Most grateful xx

[applebird in reply to Haych9]

Yep that is spot on - I always find Endo pain to be much worse in the two weeks before my period than actually during it. When it comes - even though the pain can be more intense and I'm knackered with bleeding it's almost a relief as the gnawing sharp pain isn't as bad. You're totally doing the right thing - knowledge is power. When I was first diagnosed I was petrified and almost too frightened to read about it. If you get a grip on it then you can definitely manage the symptoms better, it will just take time to figure out what triggers your Endo, what calms it down etc., everyone is a little different! The ultrasound will show up things like chocolate cysts (endometriomas) and other types of cysts/fibroids that aren't related to Endo. It's really annoying that you need an op for them to see what's going on, but take comfort that diagnostic laps are a lot easier to deal with than those where they carry out a lot of work. They will literally open you up, have a look, maybe do a bit of work if there is mild Endo and then close you up - if more significant disease is there they will reschedule you for a second operation where they have more time, more specialist equipment and in some cases another doctor is needed (ie. Bowel or bladder surgeon, though this is in severe cases usually). Remember to write down all your questions for the consultant as you might get nervous and forget (some docs can be a bit business like). I hope it goes well for you and you can progress forward to getting some answers.

There is always someone on here for advice and support so keep using the forum, it's a great help xx

[Haych9 in reply to applebird]

Thank you so, so much. Your advice and help has been brilliant. Can't tell you how comforting it is! I'm officially on countdown for my appointment now! Just hoping for some answers. The hip and back ache and groin pain is driving me insane!! I'm definitely going to start keeping a diary! Thanks again, really appreciate it xx

[applebird]

Ps. Diagnostic laparoscopy is the only way you can be officially diagnosed with endo, it's pretty straightforward, however be prepared it may be a minimum of 3 months, max circa a year until you can have the operation - the waiting list is pretty long usually. In the intervening time the consultant may recommend the coil or something along those lines. I agree with the other poster it's important to keep a symptoms diary to see the pattern of your Endo - it gives a lot of info to your doctors and also helps you to regain control over your life - there may be times in the month when you know you'll need more rest and times when you can be pretty sure sex won't hurt so much/you'll have more energy for going out etc.

[momocraig123]

So im having the exact fucking symptoms its crazy. I had a lap 3 weeks ago and they didnt find endo.