Back and hip pain with endo

[Rockygirl15]

Hi all, this is my first time posting on here so pretty new to it all. I’ve recently been told by my gynaecologist that she is 99% sure I have endo, I’m awaiting a laparoscopy and getting the Mirena device fitted at the same time. I’ve had bother the last year or two when it comes to my period with heavy bleeding and back pain but the last 7/8/9 months have became horrendous. I got put on the mini pill 4 months ago and I feel like everything had got worse ESPECIALLY the back and hip pain, I’ve tried hot baths, hot water bottle, paracetamol, ibuprofen, feminax, mefenamic acid, naproxen... nothing touches it. The pain is like a band round my back and hips and it tends to go down one thigh depending which is side is worse at the moment.

Just looking for any advice if anyone has had this sort of pain and any tips for relief from it. Thanks in advance. X

[Ninfrisby]

Hey! I know exactly what you mean with that type of pain. I have found a tens machine and a heat cushion can help too. Also just pacing yourself when it’s bad. X

[Rockygirl15 in reply to Ninfrisby]

Thank you for replying, I’ve seen a lot of people saying the tens machine helped, I had a wee look online yesterday think I might get one to try! X

[Ninfrisby in reply to Rockygirl15]

Yeah you don’t have to get anything super expensive and it jus helps to relieve some of the pain.

Good luck with then laparoscopy x

[Star-girl]

Try taking bread out of your diet, inflammation is made worse with some food. x

[HikerGirl in reply to Star-girl]

Just this simple change has made a massive difference to me!

[Rockygirl15 in reply to Star-girl]

Thanks for the advice, I don’t eat much bread to be honest but might try and cut it completely!

[Star-girl in reply to Rockygirl15]

Hun you basically experiment with food , some can assist you some will do opposite. It’s about reducing estrogen intake I think. There is lots on inter web about it Anything’s better than the pain X

[Rockygirl15 in reply to Star-girl]

Thank you so much for the tip! I’ll look into that today, I can’t deal with the back, hip and leg pain so will try anything!! X

[Star-girl in reply to Rockygirl15]

I have the same. I hobble about like an old lady too, I found it was cyst on ovary and utero-sacral ligaments. They affect walking it seems. Some days I get stuck and can’t move, it’s rediculous. Some of my organs are stuck together too. In January 2018 after a check up at the hospital, I must have been triggered by the exam, I couldn’t stop being sick for days & lost loads of weight. Then I had a reaction to the anti sickness tablets and my toungue went purple and throat swelled up, so dr told me to call the paramedics 🙄This also happened in may after flying to see my family who I hadn’t seen for a year because of pain , and needing wheelchair assistance 🙄

I used to walk miles and do yoga, but these endo implants make it a real battle. You are now an endo warrior. Yesterday was the first day I posted anything online that’s personal. It seems that there is a light from knowing others are in the same boat. Being housebound is hard on your own, and when everyone is walking around normally I get so frustrated and cry a lot, especially when I get stuck on the road and start dragging my legs home! but I have to gain strength from the battle and learn to listen to your body.

Knowledge is definitely one of your best weapons. And hugs. X

[emmaplant]

I have had this pain, mainly hip pain that left me hobbling like an old woman. My Iron stores were low and when they where with in normal range the pain improved hugely. Also I am nearing menopause so for my heavy periods I decided to have a uterine ablation, it has been fantastic. The gynecologist told me Mirenas work 30% of the time, ablation 80% and it has certainly worked for me. Emma

[Rockygirl15 in reply to emmaplant]

Thank you for your message, it’s horrible I feel like an 80 year old and I’m only 26! They haven’t mentioned anything about the ablation but since joining here I’ve seen a lot of people talk about it, I’ll need to look into it more.

[Aghl in reply to emmaplant]

What is that

[emmaplant in reply to Aghl]

Its really only an option if you don't plan on having children, I am older so it was good for me. They somehow destroy the lining of the uterus, maybe google it

[_EndoWarrior_]

I have Stage 4 Endometriosis and Adenomyosis ( duagnosed by a BSGE specialist abs Nook Dr) I get very painful lower back ache/pain and pain down inner part of right leg that radiates down to my knee which is also extremely painful and sometimes feels like a burning sensation. This could be due to an endometrial nodule on my uterosacral ligament as Stage 4 Endometriosis includes D.I.E which is Deep Infiltratative Endometriosis. It definitely sound like adenomyosis but I found this out by getting a Pelvic MRI done abs reported by a specialised radiologist who was experienced in detecting signs of D.I.E. Not all gynaecologist are experienced enough in this area so do your research. It’s only in the last 1/2 years that I did. Wish I had earlier but have had other complications. I am now having (out of choice) a total hysterectomy, bilateral salpingo oopherectomy and excision of all endometrial adhesions (caused by D.I.E and past surgeries) and uterosacral ligament nodule. My operation is early August and I know it will be a long recovery but I have a very good surgeon which makes me feel very positive about my outcome.

I am a member of Nancy Nooks Education Group which is fantastic for researching Endometriosis but must clarify this is an Education Group not a Support Group.

Good luck with everything. 🙂

[Rockygirl15 in reply to _EndoWarrior_]

Oh my goodness sounds like you have so much going on, I hope everything goes well when you get your op next month. It definitely helps when you have a good consultant/surgeon with this kind of thing so you can feel more at ease with it all and can approach them without feeling like your pestering them. I’m constantly reading up on everything to do with endometriosis and since joining here it’s made me understand so much more about it that I never knew before.

Take care especially after your op!!

[_EndoWarrior_ in reply to Rockygirl15]

Hope you find answers and et the best treatment possible. Goodluck! 🙂

[Imo82]

This is me all over. Always had heavy periods but always thought it was normal. About a year ago i started to get building paid that radiated from my tailbone (mostly when I'd go from seated to standing). I'm a Pilates teacher and found that after a heavy class my body felt so angry. Right sided hip pain that radiated. Periods became irregular. After about 6 months and a wave of heavy bleeding with nausea and dizziness i took myself off to A&E. They suspected pelvic inflammation but tests came back neg. My GP referred me to see a gynae and I paid for a private consult. Both docs were able to feel nodules on one of my uterosacral ligaments and told me that i had endo. Every day since that last wave of bleeding and nausea (approaching 5 months now) I have had to manage huge changes, fatigue, napping, huge clots with period and angry pelvic pain and heaviness, bum pain, stabbing hot poker pains. Gynae is fitting a mirena this week to maybe offer some relief whilst I wait for laparoscopy and excision which will hopefully be in the next 3 months. Reading your question really resonated. Keep driving for a diagnosis and read lots. When my gynae told me i had endo i didnt believe him. I have two wonderful kids and assumed endo would mean that wasnt possible but thats not the case in all cases. The more I've understood the more I've realised how affected I am. Equally I have had 2 csections and LLETZ for cervical cells and gynae advised that this can encourage growth on scar sites. Who knows until they look and see what I'm dealing with. Good luck on your mission 😊

[Sarahlala46]

Hi this is exactly what I have had and I’ve just been told I have stage 4 endometriosis. Make sure you get the laparoscopy done soon and you find time for yourself to rest as that’s one of the hardest things I have found. I also found excercising more helped the pain as well as eating healthier. Hope you get this sorted and feel better soon.

[Sparklyjo]

I have awful back and hip pain even now , I had a hysterectomy aged 32 . It's so frustrating isnt it. Also just be careful with the mirena hunni, I had it fitted before I had to have my hysterectomy, it was fitted in the April and I bled solid till August and then spotted in between my periods ALL the time, it was awful!! Chin up hunni hope things get better xxxx

[linakharnak]

I suffered with same type of pain for 8 years without a diagnosis. By the time I got diagnosed I lost my left kidney because my ureter was strangled by my endo. See an endo specialist and a urologist. Get an MRI asap. You can Google my name and Washington Post. It was such a freak show I made it into a medical mystery column. Don't wait.

[Chiara17]

Hi there

For some reasons I have noticed worsening of the bloating and a bit of pain radiating to my hip since I m on minipill..hope it's just a transitory effect. I have been on it since June. Good luck with the surgery, I m also awaiting for a laparoscopy.