1st consultation with endo specialist- confused feelings

[endoliv]

hi, I guess I’m just posting to see if anyone’s had a similar experience. I’ve had pain mostly on my left side (pelvic pain) which is more excruciating during my period and now during ovulation too.

about a year ago a pelvic scan showed I had a hemotometra which the endo specialist said may have gone by now. They asked if I had pain prior to copper coil being inserted and I said yes as I had the same pain just not as bad before my coil insertion. I also have lower back pain and leg pain now which I didn’t have a couple of years back making it really hard for me to exercise and do things.

I’ve been put down for an mri and laparoscopy in possibly another years time *sigh* but the specialist said I don’t have a strong case for endometriosis because I have back pain? Which they think sounds like a separate issue? They also think the copper coil may be causing more of my pain issues? Although I’m pretty certain that this pain is just the same but worse from when I had it previously. They also suggested progesterone only pill may be better than copper coil does anyone have experience with this contraception?

Has anyone else been told this? That lower back pain isn’t associated with endo and if not is this more common with any other gynae conditions?

[Tangoandmax]

I’ve recently had first lap, removal of endo from pelvic walls, ligaments and back of uterus to detach organs which are stuck together. The majority of my pain has always been lower back and down my legs, outside of my period - sometimes so bad I can’t stand. This is a completely known/common symptoms of endometriosis. I’d be extremely concerned a specialist has said lower back pain isn’t associated if I’m honest, is it an NHS doctor? I think you should request an alternate consultant/second opinion xx

[endoliv in reply to Tangoandmax]

See I thought that might be the case. I was surprised they said it seemed like a separate issue. Yeah they said they were an endo specialist (yes NHS, waited a whole year for the appointment which has sucked).

I don’t know I guess I should be relieved that they said I can still be offered an mri and laparoscopy even if they don’t suspect to find anything? I suppose I was just hoping for a bit more certainty/support from a specialist…..

[Joonaspryte]

What???? if it’s lower back pain, then it’s another symptom of endometriosis, was this specialist even an endo specialist?

Endo can cause you to have pains in many places.

Pelvic and lower back pains, leg pains, pains in your bowels, pains and spasms in your diaphragm .

Thoracic endometriosis can cause pains shoulder tip and neck, even

Hmmmm doesn’t sound like he knows his endo facts

[endoliv]

Thanks both. Will see how long they predict it will be for me to get more scans but a second opinion might be a way forward too for sure.

[CitizenErased]

Yeah, back pain is definitely a symptom of endo! I get horrid lower back pain.

Also, I am currently on the progestogen only pill. Been on it since August. I felt horrible for the first six to eight weeks, just really low in terms of mood, and I had almost constant light bleeding, but it has settled down now. I feel a lot better and haven't had any bleeding for a while now, so I think it has basically stopped my periods (which is fine by me as my pain is mostly cyclical). It's really helped my pain overall. So if you try it, give it at least three months to settle down. But everyone is different, so there's no telling whether it will work better for you until you just try it.

[Mneutz in reply to CitizenErased]

Be careful. My daughter, early 20’s, was on progesterone only pill. Made her go into early menopause. Thinning and Hair loss , heart issues, candida overgrowth gave her SIBO with food sensitivities like celiac

[CitizenErased in reply to Mneutz]

I don't think that's a very common reaction to this pill at all. Progestogen only pills are generally considered safer than others. Like I said, I've had no problems with it now that it has settled down.

[Sunset-lady]

I had extremely debilitating back pain that came from nowhere and stayed for years. I spent thousands on physio, pilates, chiropractor and osteopaths but nothing fixed it. Then I gave up alcohol and changed my lifestyle and it eventually calmed. I know now it was a major aspect of my endometriosis in my early forties. Today it's completely gone but at its worst, I couldn't put my pants on. I saw so many clinicians and not one made any connection to endometriosis. The lesions end up pulling our nerves and muscles. One women on here explained it really well. Back pain was one of the worst parts of this as it stopped me exercising and then I became depressed. You need to strongly advocate for yourself and tell your consultants about this or even better see someone who understands endometriosis. I'm so bored of having to explain it. It's as common as diabetes and yet most people have never heard of it. I had to go to A&E last week because of it and they'd never heard of it. Keep pushing x

[BloomingMarvellous]

Totally part of Endo. Got the T shirt on that. Left side is the commonest start point for Endo according to several studies. The inflammation affects the pelvic floor and the swelling can impede the blood flow down the leg and into the back causing referred pain even before it can spread to the ligaments and restrict muscle tissue. If it’s in the muscle and around the ligaments then the resulting pain is even worse .

When the tissue of the pelvic floor is compromised the whole physical cradle can’t work as it should causing the whole uterus to become shifted straining the ligaments. As the uterine ligament is the strongest in the human body , as wide as 3 of your fingers that being lopsided will affect the functioning of the back !!! Ask any pelvic physio. If you’d like more useful info Dr Angie Muller did an interview with Leah Brueg that’s totally worth the listen. @leah-brueg follow her links to podcast number 52 , it’s about an hours length.

Get yourself a second opinion (and perhaps your “specialist “ has had a moment and forgotten their functional physiology ) …

[endoliv in reply to BloomingMarvellous]

Thank you so much for this, that’s really helpful. My pain is excruciating on my left side so that would explain a lot, will definitely listen to that podcast!

[BloomingMarvellous in reply to endoliv]

Hope it eases up soon . It took me quite a while to shift it all and surgery was only part of it.

[Lornalost89]

The specialist I seen in a BSGE Centre said to me " I'm a gynecologist not a back dr"

and completely disregarded my back pain even though I have bowel endo, they said because im using zoladex any symptoms I'm still having can't be related to endo. 😔 they also advised my only other option would be to have the progesterone pill which I refused as I've used it before and I had an awful time with it.

For now I am staying on zoladex as it is helping me and this is the "long term" plan for my treatment.

[Tangoandmax in reply to Lornalost89]

I’m completely perplexed. I had an unsuccessful colposcopy (due to pain) pre diagnosis and the nurse asked if I was experiencing lower back pain and pain down legs as well. She told me there and then it was likely endometriosis.

Hoping you have a different specialist now, if not.. absolutely worth getting a new one. Baffling!