Could i still have have endo?: Ok so... - Endometriosis UK

Endometriosis UK

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Could i still have have endo?

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Ok so basically i suffer with lower back pain mostly when on my feet its like really strong period aches, it starts mid cycle which is accompanied with pelvic aches and sometimes a sharp pain and it also goes down my legs. It makes me feel sick and the tiredness is unbelievable! I have heavy periods and can be a cycle of anywhere from 29 to 35 days. an ultrasound showed lots of small fibroids but they said nothing to worry about. I had a laparoscopy yesterday and they found my left tube was inflamed with some sort of cyst on it that they would not touch and the dye wouldnt pass thro so obvoiously blocked. All this but no endo seen! so could all this be causing by pain or coyld endo have been missed. Please any advice would be great as im now referred to fertility which is another two to three month wait!!!!! Thanks kirsty

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Emmashead profile image
Emmashead

If Endo has never been found then most likely not, there are alot of things that are similar to Endo pain, so what they did find would most likely be the cause of ur pain xx

Thanks thats all i really want someone to say, the doctor yesterday was like no that cant be causing ur pain, but to me obviously it is!!!! Xx

Amb43 profile image
Amb43

Hi, I too have that lower back pain, like period or labour pain, nagging dragging, dull ache. I have had it every day now since October, when it didn't go away after my period. (I have always had it for a few days with my period and thought it was normal) I also have pelvic pain, sharp stabbing, burning, pulling, but not so often.

I have a long story, (initially insignificant cysts and fybroid found during scan) but, basically, I had a Lap about 6 weeks ago, and although they didn't expect to, they found Endo, on both ovaries. They told me at the time that it would not be causing my back pain. I was referred to a back pain clinic at my local hospital, had a lumbar spine x-ray which showed all was normal, had my meds reviewed with a possible change (I am on rather a lot including morphine) and told that my back pain was indeed a Gynae issue.

Sooooo, am now waiting for my Post Op Appointment to find out what my options are regarding my ovaries, and to discuss (and push if necessary) what could be the issue/link with Endo of my back.

I am almost bedridden, only able to be on my feet about ten minutes, then when I sit or lay down the pain kicks in and I curl up in a ball, crying but try to lay on a hot water bottle or my heated cushion which really does soothe it. I am getting to the end of my tether, it has been such a long time now, pain every day, normally VERY independent but relying on my mum and son to take care of me as I can't do much for myself. Even a bath is like a Marathon, where I have to take my Morphine first.

So, you definitely need to push to get to the bottom of this pain, it is NOT normal, and as for the blocked tube and cyst, I would be inclined to ask for a second opinion, surely it can't just be left there, and will most definitely be an issue when it comes to your fertility. Speak to your Doctor and push for a second opinion. Good luck and hoping you are not in too much pain.

xx

in reply to Amb43

Thanku, just discovered ive been referred to a dr in fetility who is the top gynae doc at our hospital so going to push him for answers. Bless u my pain is not as bad as urs. Hope u get sorted soon. Were just numbers to these docs arnt we but its us living with it!!!! Xxx

Amb43 profile image
Amb43 in reply to

That's brilliant news, fingers crossed they are more likely to help you and your situation. You say your pain is not as bad as mine, but your pain is pain, and we shouldn't have to suffer at the hands of those telling us "it's normal", "it's part of being a woman" etc., we know our bodies and we know when something isn't right. I won't go into my long story, it is on here somewhere, lol, but if I hadn't pushed and stood up for myself when I did, I would have waited from December to the end of April, still suffering this pain, taking yet another tablet (which I haven't even needed because I haven't had a period in all that time), and not yet even diagnosed. You're right, we are often just numbers, in fact, my mum (who came with me on my first appointment) and I distinctly knew the Registrar who saw me had had enough for the day and couldn't wait to get away. In fact I think they forgot I was there! When she asked the nurse where the "bin" was for the used speculum after my internal (which was rushed and rough) , she was told "It is all packed away, we thought we were all done"!! I had waited almost two hours, some of that due to the fact that a lady arrived late, ok, this happens, kindly they agreed to still see her, BUT BEFORE ME!! Surely it would have been fair to make her wait!? Anyway, sorry for getting carried away, I do hope that you will soon be on the road to discovery and therefore treatment. On a positive note, I can't be sure I had Endo way back 20 years ago, but we tried for two years to conceive, I had two miscarriages, and then finally gave birth to a wonderful baby boy (we named him Nathan meaning Gift from God) and he is 21 this year!!!

Hoping you have some news very soon, take good care of you xxx

Emmashead profile image
Emmashead in reply to Amb43

Hey i just wanted to say that back pain/ache is definitely a symptom of endo, keep fighting ladies ur both strong :) xx

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