Could my sore knee(s) be related to my endo?

[sam_naylor]

I have a sore knee everyday now. It used to be every now and again but has been going on for about 4/5yrs now.

[bonygirl1]

I have suffered with terrible knee pains daily since a teenager (I'm now 37) they swell and the pain is like a constant tooth ache! I was told it was growing pains, chondromalcia patellae which is a posh name for knee pain in young adults! and in 2010 in was diagnosed with joint hypermobility. I'm convinced it's from having endo, but the professionals like to drag my previous history up and blame that! Do you also get pain in your hips and ankles?

[sam_naylor in reply to bonygirl1]

Nope nothing in my hips or ankles just my knees. They really hurt sometimes. I've been to doctors about it but they sent me for an x ray and nothing showed up so they just said nothings wrong. I can't lift them very high or straighten them properly unless I'm walking or lying down.

[bonygirl1 in reply to sam_naylor]

Bless you, I know how you feel, it's gets you down and people around you don't understand what the pains like. I would contact your consultant or an endo nurse and have a chat with them about the pain you are in, and don't hold back, let them know exactly what it's like to live with every day. Take care X

[Bobbluesky in reply to bonygirl1]

I can believe what i'm reading, I was told I had that posh knee pain ( chondromalcia patellae) in my early teens as well. I am also 37 & have recently been suffering pains in my ankles & pains in my toes, I have always had severe pains in my lower back & hips, so bad that some days I cant get out of bed without help, & I can either sit or stand it's so bad. Glad I read this as it's a comfort to me that i'm not mad & someone else understands the pain. (Can this all be related??).. Take-Care.. Xx

[bonygirl1 in reply to Bobbluesky]

I'm positive it's all related but the professionals like to disagree and say that the endo doesn't help my other conditions I have and that's why I get so much severe joint pain! I too get severe pain in my lower back and hips and you are certainly not mad I understand the pain and discomfort you experience. Here's to another day! Take care X

[Bobbluesky in reply to bonygirl1]

Thanks for your reply, Just lets me & everyone else out there know that more people than we think understands & we are not mad & the pain is Real. Here's to my be getting some Pain Free Day's, It's great to know I am not alone. Take care. Xx

[worth71]

not sure if this helps but my left knee plays up something rotten, my worst side is my left side, and i believe they said there is more endo that side and its causing something to press on my sciatic nerve, i quite often limp and the pain shoots straight down to my knee xx

[Tilleg in reply to worth71]

OMG, I’m so glad that I’m not imagining this. I am absolutely crucified with pain in my left knee every month when I take my period. I have been running to Doctors complaining for the last 4 years and when I tell them they look at me like I have 40 heads. My Doctor has now finally referred me to be checked for Endometriosis 🤦‍♀️

[Lillil]

Wow! I also got diagnosed with chondromalacia patella (knee pain and eroding cartalidge behind knee cap!) when I was a teenager.

I've never met anyone else who has, everyone just looked at me as though I was making it up!

I was told at the time to loose weight- i'm short but only weighed about five stone at the time!

I never thought of the endo connection until now but it makes sense!

I too get serevere hip and leg pain. My gynae has told me the pain is not really there but referred from my pelvis.

Ask gp to refer you to a physio to help. They often come up with good ideasxxx

[bonygirl1 in reply to Lillil]

Now that's three of us with it and all of us have endo, I am defo convinced there is a link. I too have never met anyone who had chondromalacia patellae, I've got a leaflet about it and show it to people because I can tell they think I'm making it up! I've seen a few different physios and although my muscles have got stronger the pain has never gone away! X

[Bobbluesky in reply to bonygirl1]

This is so unbelievable, how can Health Care professionals explain this, 3 of us so far have the both conditions & Pain in the same place's. Don't know about either of you but most day's the pain can be that bad I can hardly move, this makes me very moody & Cross I get very bad mood swing's then very withdrawn, i'm on antidepressants, I have under-active Thyroid but I take my medication but some-times my GP puts my moods down to it, but I try to tell Him that it's the pain, but it's hard to make them understand.... Sorry for the Rant.. But I would say you can relate. Take care..X

[bonygirl1 in reply to Bobbluesky]

Don't apologise for ranting we all need to do it. I am with you there with the pain and struggling to move, and yes everyone would say that my middle name is Moody! X

[missteal]

OK ladies......I have hypermobility syndrome otherwise know as ehlers danlos syndrome type 3. If anyone tells you joint pain and endo can't be related then they need a slap!!

I was recently put on norethisterone for my endo/adeno. These high levels of progesterone make your body think it's pregnant which is why you don't have periods. When pregnant you release a hormone called relaxin to loosen up your joints ready for giving birth. In the nine months of being on norethisterone I dislocated both my hips, my wrist, elbow and knee cap causing lots of soft tissue damage and my back pain got a lot worse.

HMS/EDSH is a condition where you have mutated collagen (yes I am a mutant - kinda like the mum from the film the incredibles). Collagen is the bodies version of glue, it holds everything in place. Hms/EDSH means that our glue isn't as strong as it should be so our joints are a lot more flexible and can dislocate easily, you get excessive bruising and easily broken skin which has a poor healing rate too. You can also get symptoms internally such as IBS, gastric reflux, restless leg syndrome, migraines, heart problems and if you have HMS you are 4 times more likely to have ENDO!!!!!! FACT!!!!

People with HMS/EDSH are know to have very painful periods as the womb can contract more than a normal person as the tendons/ligaments holding the womb in place can stretch further. Ladies with HMS/EDSH have a lot more dislocations and pain the week before their period when their progesterone levels are high.

I suggest anyone with HMS/EDHS to read Isobel knight's book "a guide to living with hypermobility syndrome - bending without breaking". She has it herself and also has endo. There is an entire chapter in there about how ladies hormones play a role in joint pain and I showed this to my GP who immediately took me off all hormone treatment and apologised to me with his head in his hands!!!

If anyone ha any questions on this subject then feel free to inbox me as I seem to have inadvertently become a specialist on the subject!

Have a pain free day ladies (unlike me who's just come on and my "sticky ovary" is stuck to my pelvic wall which is pulling so hard I could cry, oh and my hips, knees and back are all flaring up too because of the hormones!!)

xxxxxxx

[Gill78 in reply to missteal]

Well I have just read this and it's made me feel much better I've suffered since I was 13 am now 39 had all sorts done to me to help the pain from the age of 13 I used to tell my mum and the doc I had a pain in my left hip like a toothache which I think they thought I was mad was told it was my bowel 🤔 I am just waiting for a hysterectomy which I was told I had at the age of 14 we don't have any children after 4 Ivf cycles 2 pgs lost last one was only 2 Yrs ago I see the little heart beat then 5 days later my little one gone 😭 I have had 6 dates for hysterectomy and the keep cancelling it 😡 The point is I was made to feel like a hypochondriac because I have pain in my left hip right knee elbow and shoulder and lower back I have been given water tablets for the swelling like I don't we enough tall night long so thank you this has made me feel great I might even print it off and show my doc.

Many thanks I feel so much better I started to believe it was in my head 😘

[Juleyanne]

I am an endo and adhesion suffer now in menopause by a few months, no periods! However, although they say endo reduces as oestrogen drops during menopause. I have recently been diagnosed with hip arthritis on the right side. I also have diverculitis! I am currently getting a deep pinchy cramping pain permanently in my right pelvis, just about an inch above where I believe my right ovary is. I have lost both fallopian tubes due to endo and I am confused as to what is causing hip pain, deep pinching twisting groin pain and a permanent ache down my right leg to my knee. Is it the adhesions (which Gps think it is) or the arthritis in my hip or the diverculitis (as bowel is giving me big problems from constipation due to codeine use to sudden diarreoh and I have been incontinent at times too, not good!

If anyone out there has any info on this I would be most interested?

[Juleyanne]

Oh forgot to say I get bladder pain especially at night, wakes me and I can't hold much urine, it hurts! Sitting hurts deep in my groin (right side) and I am so so tired all the time.

[Sweetie09 in reply to Juleyanne]

I have exactly the same as you am up weeing all night which in turn makes you shattered the next day!!

[maydog]

I wonder if you could get in to see a authotic practitioner at the hospital. They check your gaite , and can give you inner soles to help .

[Sweetie09]

Am so glad I logged on and read all your posts!! I've had knee problems since I was young and put it down to doing a lot of sport. I was finally diagnosed with endo after 10 years of going back and forward to my gp with various symptoms with the usual diagnosis of ibs! My knee pain and hip and back pain oh yeah and the constant period pain really gets you down! I've just had my 4th lap and had a cyst removed adhesions sorted they found no endo this time but have been in cerazette for 4 months prior to the surgery. An still having the pelvic pain and the period type pain as before does anyone else have this???

[bonygirl1 in reply to Sweetie09]

Yes I had my lap on the 14th June and I've still got pain in my back, hips, pelvis, knees and ankles! It's worse than before op and it's driving me mad!!!!

[CaptainE]

I am so glad I found this post, I suspect I may have endo and have a lap in a couple of weeks. I am doing a masters degree in health psychology and found some info about a possible link between joint pain and endo so thought id look into this a bit further, so that's how I came across this post. I have had knee pains since I was a teenager and was also told it was just growing pains, in the last year my knee pain has become worse and worse, along with hip and pelvic pain and problems with periods. I also have a small lump on one of my knees which has doubled in size over last year. Ive been sent to physio and ultra sounds for knee and recently had MRI which I am waiting for results for as well as seperate ultra sounds etc for the gynae stuff and have now been reffered for a lap. Mostly ive been told they dont know whats wrong with my knees and I havnt been offered any explanation for the other stuff, but reading here that it may all be connected has given me a bit of relief. To be honest I have kind of accepted the fact that my knees are always going to hurt, no matter what I do but if I do get a positive diagnosis of endo I will definitely bring this up with my doctor, so thank you for sharing everyone!

[mylady77]

I see this post is dated 2 years ago but I'm so glad it's still here! Had another sleepless night with awful hip and knee pain, and have been driving my partner nuts by making several trips to the toilet every night.

Glad to know I'm not 'dropping to bits' as I keep telling myself and there's a good chance it's all related to the endo.

Thanks everyone!

[Mannysmum]

I have endometriosis ,I also have chondromalacia patellae my knee swells up and gets incredibly painfull everytime my period is due this can't be coincidence ? Surely ?

[KimJL]

Hello All,

I am new to this forum. I have Adenomyosis, diagnosed since 2005 after a biopsy was done on suspicious growth, which was misdiagnosed as a fibroid, was removed from my uterus via myomectomy . I am a 39 single woman, no kids, no husband, but in a long term relationship & I am planning to have a partial hysterectomy in a few months. My doctor of 11 years had previously wanted me to wait until I was closer to 50 to have the surgery, but she finally said yes earlier this year. And...then she migrated to to another country to be with her hubby *sigh*. I had to find a new surgeon & I thought as long as I am planning to have the surgery, I will try to figure out all the other things that are wrong with me.

I had been having some horrible pain in my tailbone & the lower back pain was getting worse over the past year or so. Occasionally, for the past 8 years or so, I have had the sciatica pain on my right side, from hip to toe- it feels like I rubbed hot pepper on the inside of my skin. Noting stops it, not massage, heat or cold compresses, I just usually try to elevate my leg & weep silently until it stops. I am also very clumsy & sometimes find it hard to balance. When the pain in the tailbone was really bad, my hands would shake uncontrollably, my handwriting & walking were affected negatively, in particular, my left leg felt weak, My acupuncturist sent me for an MRI in June, thinking that I had Endo deposits which would cause the back & tailbone pain & other symptoms, but there were no deposits outside of the uterus.

A few weeks ago, I woke up with my right knee swollen & becoming worse, it was hot to the touch. I also had a low grade fever, a local GP gave me a cortisone shot in the knee after my bloods came back negative for Rheumatoid Factor & Uric Acid, my inflammation markers were high. I asked him if he thought it could be the Adeno, he said no. The swelling & pain subsided, but I decided to visit an Osteo Specialist. After his exam he has informed me that I have inflammation in the entire spine, in the hips & my right knee. He gave me a list of possible causes:

- Mosquito borne diseases like Zika, ChkV, Chikungunya, Dengue, lesser vector borne illnesses that mimic the aforementioned. I live in a Tropical area.

- Sitting or Falling, even in childhood re: tailbone pain. I did fall pretty hard on my bum when I was a teenager & in my early 20's.

- Bad posture re: creaking & popping neck joints

- Inflammation from the toxins in the womb -because of Adenomyosis- affecting the joints of my spine.

The last one is very interesting, he said it is rare, but it happens. I was shocked ofc!!! How could this affect my joints?? But after reading these posts, I see that I am not alone. He said the damage done cannot be reversed, but we can stop the damage & preserve what is left. I have not had a definite diagnosis, but it seems very possible that the Adeno may have caused my joint damage. He put me in some meds (which I do not think worked), I have to return to see if he wants to run any further tests. He also thinks that after the hyster, I should feel better.

Incidentally, my Gastroenterologist & former Gynaecologist/ Surgeon suspect that the IBS I have is caused by the Adeno also. I am scheduled to have a colonoscopy later this month. In the meantime, I am continuing with Traditional Chinese Medicine (TCM) treatment for pain management (acupuncture, cupping, heat therapy, herbal treatment). I usually have less back pain & cramps from hell when I schedule 1 or 2 appointments close to period time.

I have been using TCM for pain management for about 5 years now. I experienced a seizure in 2010 while on BC pills & since then the docs have been reluctant to put me on combination BC pills. I have tried some Progesterone, but those made me feel even worse & I weaned off of them when I started the TCM. I also developed gallstones after 6 months of anti-seizure/migraine medication called Topamax (but they told me that it was because I was a fat girl) & consequently had my gall bladder removed. I have also read that people missing the gallbladder have joint issues- not sure about the accuracy of that theory.

Adenomyosis symptoms I have had & still have include severe cramps (feels like King Kong is wringing & squeezing the womb), heavy & irregular bleeding, clots, pain & bleeding after sex, sensitive feet, cold hands, sharp stabbing pains in the pelvis & buttocks, aches in the thighs, swollen legs, feet, ankles, severe & chronic migraines with aura & , nausea, low grade fever, sometimes upset stomach & vomiting during the migraine episode, facial tingling & numbness, pain in jaw, nausea, sinus emptying & ringing in ears after migraine episode, pain in shoulder, fatigue, anaemia, mood swings, burning sensation in the breasts, heart palpitations, anxiety, general pain all over the body, hot flashes, low grade fever with ovulation & just before period, IBS, depression, loss of independence, extended stomach, severe bloating, PCOS, insomnia, lower back/hip pain.

The treatments have greatly reduced my Adeno symptoms & limited them from occurring almost everyday to just within the 1 1/2 to 2 week PMS/period time- it is better than nothing, so I will take it for the meantime. Best of luck to all. I will update on the Osteo visit.

Kim