Feeling worse

[Feduplau]

So the past couple of weeks my back pain is just unbearable literally feels like there’s is a rock on fire and it’s been shoved into my back on the lower left side pain radiates down my legs at some points on the day and it makes me want to wrap something tight around my leg, and I am soooooooooooo tired like literally feel like I could drop... I’m in the middle of appointments at the moment with the gynaecologist wonder it I should wait till October or see the gp to talk about these symptoms, I haven’t had a diagnoses as been going around in circles with doctors for near enough 2 years

[Sophie87]

I have similar symptoms, pain in lower back mainly left side and pain radiating to my leg. My specialist said that is a sciatica pain and it's one of endo symptoms

Do you have any treatment in place (pill)? Or are you waiting to see gyno?

[Feduplau in reply to Sophie87]

Yeah I’m on the combined pill which has controlled my bleeding since the beginning of July but that had its own side effects for me literally a big ball of emotions but I’m so sick of bleeding I don’t mind but pain wise things haven’t changed much yet

[Sophie87 in reply to Feduplau]

That's good that you are taking something for your bleeding. I found that when I was bleeding then the pain was getting worse (not just during periods).

Yeah, the side effects are awful They always say that you need to wait 3 months before you see/feel any difference but hopefully your body will get use to them asap and things will settle down for you

[Feduplau in reply to Sophie87]

But I went to a clinic and spoke to a doctor about my symptoms to get the pill it wasn’t a gynaecologist who prescribed it to me.

[Feduplau in reply to Sophie87]

Are you on the pill too?

[Sophie87 in reply to Feduplau]

What's the name of pill you're on? I've been on many different pills over the years, and this time I'm on cerazette which is not helping on its own, that's why I have to have another op to remove endo and put me on Mirena coil and cerazette. I found that this is the only combination that helps me..

[_EndoWarrior_]

I had terrible lower back pain. Also had pain going down my left leg. I had Adenomyosis and Stage 4 Deep Infiltrating Endometriosis so I recently had a total hysterectomy and excision surgery by an experienced BSGE and ‘Nook’ Endometriosis Specialist August 12th. Slowly recovering now.

Diagnosed with Endometriosis and Adenomyosis via laparoscopy but also had MRI to see how far Endometriosis had spread as it was so extensive. This confirmed Deep Infiltrating Endometriosis and the reason for my pain I was experiencing. I’m in early stages of recovery but will be seeing a pelvic floor physiotherapist as the endometrial adhesions I had have effected my pelvic floor so I need to do exercises etc to retrain my pelvic floor muscles. Shall be starting this next month.

All I can say is get a specialist I have mentioned above. Through the NHS you have ‘The Right to Choose’ a day be referred to a specialist. If you have to travel further a field then do so. My specialist Nook Dr was over an hour away.

Also if you don’t know this already ‘Ablation’ does not remove Endometriosis only Excision. Also the Pill masks symptoms (eases) it dies not stop the growth as Endometriosis produces it own oestrogen.

Good luck !!! ....do your research. It helped me. 🙂

[StefaniaJW]

The GP won't help you and the gyn won't help you either.

Please seek the immediate help of a chiropractor to exclude issues with your spine and then book an appointment with a Nancy Nook surgeon. Call ASAP because they are always booked with appointments and laps! Please contact me privately if you need names of experienced endo excision surgeons.

[Lou93]

I get the same symptoms as you awful back ache and pain down my right left seems to radiate from my hip back and down to my knee I sometimes struggle to stand on it when it flares up...i had endo removed april this year so I am also feeling lost with it all. Please remember your not alone with it x

[StefaniaJW in reply to Lou93]

If you had it removed via excision, why do you still get pain? Didn't you do physical therapy? Do you ever go swimming or walking?

[Lou93 in reply to StefaniaJW]

I had keyhole surgery to remove my endo in april so I’m not sure why I still get the pain I do also have adenomyosis I’m not due to see my gyne doctor January but if it gets worse I will have to go back earlier and yes I do swimming regularly but it’s not helping any ideas? X

[StefaniaJW in reply to Lou93]

Keyhole surgery is laparoscopic surgery. That tells me nothing on whether your surgeon is capable or not. I need to know whether it was ablation or excision keyhole surgery and who your surgeon is (the name). Please don't write his name in the comments below, PM me.

[Lou93 in reply to StefaniaJW]

Yes I know what it is and he was a specialist I did all my research before I had the op I just haven’t had a copy of the notes but I can request these as I went private to get the best care.

[StefaniaJW in reply to Lou93]

[Post has been edited in line with Endometriosis UK's code of conduct]

Private doesn't necessarily mean best care but I believe you. The problem is many call themselves specialists when they are not. Even excision specialists are not all trained the same and not all all enough experience to treat all cases.... surgeon who is able to treat adenomyosis effectively as well (because that needs a different kind of approach obviously)

[Lou93 in reply to StefaniaJW]

I know it doesn’t but I wasn’t getting the care I needed from the nhs so it had to be done.

[StefaniaJW in reply to Lou93]

Ok, I'm glad you found better care privately but from what you said you're experiencing pain already and I was wondering whether you were seeking an even better gynaecologist or questioning the effectiveness of the lap

[Lou93 in reply to StefaniaJW]

Yes my symptoms seems to be creeping back so I’m arranging to see my doctor and find out what’s going off it’s very annoying as I improved slightly and from what other posts I’ve read it’s a common thing for symptoms to come back even after endo removal surgery😞

[StefaniaJW in reply to Lou93]

[This post has been edited in line with Endometriosis UK's code of conduct]

Yes, it's common if the laparoscopy was not performed correctly, therefore I strongly suggest you to SWITCH gyn. Do not think that because it's common, it's normal. No, laparoscopies don't work this way. If you get excision with an excellent excision surgeon, endometriosis will not be back for years (at least 2, most women are not in pain for another 5-8 years). Obviously, these excellent excision surgeons are not many but thankfully many of them work through the NHS too, so maybe give that a go. A better excision surgeon is probably going to be better at dealing with adenomyosis too, which I hope your pain is related too. I genuinely hope you can find the courage to say "no, it's not normal to be in pain a a few months after surgery!". I am beginning you not to settle for the gyn you have researched and found but always seek THE BEST surgeon in your area or further away if needed.

[Lou93 in reply to StefaniaJW]

Thanks for your advice on this and I will look into it ☺️