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Endometriosis UK
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Does anyone else suffer with lower back period pain, without the period.

Every day now for the last 12 weeks I have had either mild, strong or very strong lower back period pain. You know, that dull, dragging, ache in the lower back ? I have always had this with my period but this time it didn't go away. I had my first Gynae appointment today and the Consultant (a lady thank heaven) said it must be a back problem as you only get period pain when on your period, not when you are not bleeding (although I did tell her I was on day 10 of a dark brown, clotty, stringy discharge after my period (sorry if tmi), and she has told me I need to be referred to Orthopaedics!! Does anyone else suffer/has suffered with lower back period pain as part of their symptoms. I explained I have always had that type of pain with my period but she said it couldn't be Gynae related if I am not bleeding. I'm confused. :(

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Hi,

sorry you're in so much pain :-(

i had a hysterectomy 10yrs ago, but they left my ovaries - endo has now returned - the last month/6wks i have had the same back pain, which makes me feel so poorly i have to lay in bed with the electric blanket on - the only thing that soothes it.

so yes, in my experience you can have back pain without a period - i haven't had one for 10yrs!!

Unfortunately gyny's can give confusing and misleading information - i recently had an apt with an endo specialist who seemed to contradict a lot of what my previous gyny had said - try 2 get a referral to an endo specialist.

hope you feel "better" soon - you're not alone - sometimes it helps to know that - because if you're anything like me, you begin to feel as if you're going mad or imagining things.

all the best to you, :-)

Sarah. x

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Yes, I have the same problem. My consultant (endo specialist) said it is where my bowel is stuck to my uterus that causes that dull achy pain. That has made me take 3 days off of work because it has become intense! It's hard enough having dreadfull periods but even harder when you're in pain 24 hours a day 7 days a week!! Take care and rest as much as u can. X

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I get this too. It's horrible and makes me want to curl up in a ball.

I think symptoms differ with every person and the problem we have is that even though it's a massivley common illness, there's still a lot to be found out so doctor's can be quite dismissive.

As said above, try and see a specialist, I saw one in Macclesfield, Dr. Mellor and he was really good and helped a lot compared to other people I have seen.

All the best,

Xx

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I get it too but was told mine was IBS does feel the same as period pain but first experience it when pregnant went to hospital and said IBS are yr bowel movement normal when u get these pains? Xx

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oh yes i do get lower back pain and it related to the endo which i have been told... even when i have my period i dont get any but without period i do but occasionally and it is a nightmare and also i get thigh pains too and it really achy when walking as i wanted to sit down all the time when i get for the back and i just have to tolerate it... xx

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Lol, that's a joke that the gyna said back pain was not associated with period because you were not heavy bleeding! And funny that symptoms of endo include lower back pain. Maybe they said that because you described it as like period pain? It's better to describe pain in words such as burning, pulling, sharp, dull, aching, throbbing etc, so the doctors don't try to label them something they are not.

How frustrating!

Yes I get constant lower back pain, and it is very annoying and can be very restricting sometimes. But have found that the heat wraps by thermal care are VERY helpful especially in this cold weather I have been able to manage standing and walking more since I started using them, they last over the 8 hours too. Highly recommend them for lower back pain and tummy ache while on the go, very similar to a hot water bottle but they stay put.

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Im glad you have recommended the thermal care heatwraps as i have just purchased some now for work as i have constant back ache and stomach ache (worse when im due on) i havent been diagnosed with endo but it is suspected. Really hope the wraps give me some relief as im a dog groomer and im constantly on my feet and up and down the stairs.

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Thank you all SO much for your response and confirmation that "yes, you can get the pain without menstruating". I am still so very baffled by my Consultants opinion, why would she not know that!? She also said, when I asked her, that Endo is not Hereditary, when I have read all over the internet (Official Medical sites included) that you can be more likely to suffer Endo if you have a Mother or Sister who has/had it. My mother has :( Bless her heart as she is the one taking care of me, she is my angel. <3

Shrek - thank you - yes, my heated cushion and hot water bottle are my best friends at the moment and are never far from my side. Thank you for your kind words and for your reassurance I'm not going mad :) I did question myself a lot after my appointment, but now am just angry. I am looking into seeing my doctor again, or another (a lady) if poss, and seriously considering a second Gynae Consultant opinion. I simply can't go on with this daily pain until April when I will be seen again, it fills me with dread. Thanks again and hoping you have a comfortable day. x

petlamb - thank you - so sorry you suffer all the time too :( How did your Specialist find out your bowel and uterus were stuck, was it with a Laparoscopy, and what can be done about it for you. Wishing your pain away for your x

Jabrady - thank you - yes, I too curl up in a ball, can't move and just cry (not that that helps but sometimes have to let it out). So glad you have a good specialist, everyone suffering deserves one. Hope you are doing ok today x

keepsmiling - thank you - I too have been diagnosed (several years ago) with IBS which I have always thought is a cop out diagnosis when they don't know what it is. I did have full colonoscopy and all was clear, however I do suffer with diarrhoea (sorry) and sometimes constipation. However when this pain started my bowel was behaving pretty normally, I am now constipated (not dreadfully or painfully) due to the Tramadol, Cocodamol and Voltarol I am on. The pain is there most of the time (I get about an hour at a time relief from meds) but doesn't get worse during a bowel movement, I have however noticed the pain can sometimes be worse when the "movement" is making its way down to my lower abdomen. x

tinker241 - thank you - so sorry you suffer too, but we shouldn't have to "tolerate" it, especially 24/7 and have it affect our daily lives. Hope you are doing ok. x

hopefully - thank you - It is a joke!! I stressed to her so many times what it was like, dull, aching, dragging feeling, like I have ALWAYS had with my period but is now constant. Yes, those heat pads you stick in the back of your knickers are great, amazing how they stay warm for so long! At one time one of Supermarkets had them very cheap too, and were still very good. Hope you are doing ok today. x

YellowRose - thank you - so sorry for you that your pain is coming back after your op :( and that your pain is also in your abdomen, hips and leg, also that you have a pain in the arse :) I hate feeling like I am a pain in the arse to those who are taking care of me :(

I do wonder if as you say, and like petlamb, that my bowel and uterus are stuck together. I have had an abdominal and TV scan (Insignificant cysts and a fibroid were found) and when I asked the sonographer it would pick up Endo, she said no. Would a lap find it because of where it is? Is that how yours was found.? Unfortunately, as I have read, and my mother has been told, the more they operate, the more likely further scar tissue and adhesions are to return, it's seems a catch 22 situation.

You didn't freak me out, don't worry, and thank you for sharing your story, that's what we all need on here, lots of first hand experience from real women who are really suffering, not someone reading from a text book and sending me to bloody Orthopaedics!! I haven't been diagnosed, but it all suspisciously "fits" right back to my struggle to get pregnant, the heavy, painful, clotty periods and misscarriages I had, the pain I always thought was "normal", and also the added fact my mum has it. AS you say, these things shouldn't be left to get worse before being found, however, having an appointment the way mine went the other day, is very disheartening.

Hope you are not suffering terribly today. x

Well, lucky for you guys, my alarm has just gone off to take my meds and suppository (sorry), so I won't ramble on any more, just wanted to thank you all for your help, advice and support. Love and comfort to you all. xxx

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Hi just before my laporoscopy this week I had constant period like pain and I had only finished 10 days before it was across my lower back and in my pelvis I was takin pain killers and using hot water bottle felt unfair to be suffering without the actual period! Hope you can get something sorted out soon xxx

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To be honest my worst pain was always a week after my period and was so severe I couldnt go to work. I think its utter rubbish to say its not related.

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Thank you all again, so much. It really helps to know I am not alone, and that in fact lower back period pain is in fact a symptom suffered by real women in real pain (not that I am glad you are all suffering - if I could take your pain away for you, I would, in a second).

I have now decided to write a letter to the Head of team at the clinic I attended, letting him know how confused and distraught I was by my consultation, and asking for his opinion on the matter. I won't hold my breath for a response, so, in the meantime, am going back to my Doctor, make sure he completely understands my situation and dread of coping with this pain until April, and then ask for a second opinion by a Gynaecologist at another hospital.

Please see my question: has anyone questioned their Gynae's decision, I have a letter I am thinking of sending?

Many thanks once again to you all for your time and input. Hope your day is as pain free as possible. xxx

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Hi again ladies, and thanks again for your support. How do I go about getting a referral to an Endo specialist, do I have to convince my GP that it's what I have? x

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Wanted to thank you ladies once again for your support with my concerns and distress in December following my first Gynae appointment. Also, to update you with some good news ...

Since then, my pain has continued, and on some occasions become worse, resulting in me agreeing (I refused for a little while) to take Oramorph. I just hate the thought of being on such a strong drug on top of the Cocodamol, Buscopan, Diclofenac and Tramadol, but have to admit, has certainly helped take the edge off my pain, and not knocked me out as I dreaded.

However, I did eventually decide to write to the Senior Gynae Consultant ....

I sent a very polite letter, not complaining or confrontational, querying a few things that the Junior Consultant told me, it has taken some time, but have now had a reply confirming, among other things, that he agrees with me!! That yes, "Endometriosis (I am as yet undiagnosed) usually causes cyclical pain, sometimes the pain can exist at other times through a woman's menstrual month".

He has now offered me, and placed me on the waiting list for Diagnostic Laparoscopy. Which, as we all know, is the ONLY way to find out for sure if there is indeed Endometriosis. :)

So, was definitely worth it! To be honest, I didn't really expect even a response (Which would have been very wrong of them), just wanted to point out that I had been given incorrect information and my opinion dismissed, leaving me very distressed. Now, fingers crossed for a date soon :)

Please see my other post/question "Has anyone ever questioned their Consultant, I have a letter I am thinking of sending"

Thank you all so much for your support, you truly are all very special, we all are, and I do so hope you are not suffering in too much pain today. Please take good care of yourselves. xxx

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..... still waiting for a date for my Lap :( and yesterday was on 5ml Oramorph every two hours, on top of everything else.

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Got my Lap next Wednesday :D (Gulp!)

xx

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Lap confirmed Endo on both ovaries. Nothing to explain the back pain though x

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Lumbar Spine X-ray - normal x

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Now told spots of Endo on uterosacral ligaments.

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My wife would get really bad back pains even though she wasn't on her period. She would complain about not being able to walk correctly at times and that was hard for me to see. I made multiple appointments with slcchiro.com/ for her to see a chiropractor. She had her back adjusted and massaged out and they found a lot of tens muscles and nerves and knots that were causing her back pain. It's been about 2 months since her last visit to the chiropractor and she is feeling much better! I would recommend seeing a chiropractor.

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Does that kind of therapy hurt?

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I've got that pain at the moment, it's that same back pain you get when you've got your period, have no idea what it could be but it's really bad, when I stretch it gives me just seconds of relief, but people have said to me it could be related to gyno problems or the kidneys...

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I live in the states and have been currently getting the same back aches for the past 2 years now. I have read/been told its UTI or that at times due to your period it causes the uterus to swell up and put pressure on the blood vessels, its just your bodys natural reaction to being a woman and you shouldn't exaggerate your symptoms...which I almost pounded the crap out of that idiot gyno. I don't know what causes mine and at times it gets so painful that I want to seriously remove my kidney (even though I am sure that is not causing the problem) I take otc meds to subside the pain but sometimes it gets so bad that I get nauseated and end up throwing up, which sometimes actually relieves some pressure on my back. I suffer from PCOS (Polycystic Ovary Syndrome) which causes me to not have a regular period, actually mostly spotting or none at all (although I get all the cramps and bloating symptoms when I would be on) and wonder if that has any added affect to the excruciating back/pelvic pain. I have yet to find a reason that causes this pain so periodically (especially when I never seem to know when I am on my period b/c I am never regular) and am glad I was able to come across this forum because it makes me feel somewhat sane that I am not the only woman going through this with no explanation. If you all find a logical answer and remedy that doesn't please let me know. I'm getting looks from friends and family when I carry my besties Chili and Pepper which are basically tube socks filled with rice (just pop it in the microwave and use as a heating pad and love it b/c I can wrap it around my back, side and pelvic areas use caution they can get very hot) LOL Sorry for the long tmi post. Any added advice would be extremely helpful.

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I suffer the same problem.Sometimes the pain lasts for 2 weeks. It happens only when menstruation stops..

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I have that achy period like back pain all the time worsening on ovulation and again spiking during period. It is definitely a symptom of endo. I would be asking for a Gynea referral.

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