Help: I have had this left sided pelvic... - Endometriosis UK

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Kthack2019 profile image
13 Replies

I have had this left sided pelvic pain for about 2 years. Before it would come and go and for the past year it has been there more than not. I am on the nexplanon so I do not get periods. But I do get brownish blood and clots from time to time. Usually when the pain is at its worst I can feel it in my back also and sometimes down my left leg. I have felt pretty tired too. The pain is always in the same spot.

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Kthack2019 profile image
Kthack2019
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13 Replies
Faith27 profile image
Faith27

Hi I'm experiencing very similar!! I have what feels like a nerve pain during the time of the month in my pelvis - left side and this travels down my thigh! Have you been diagnosed with endo? I'm awaiting a laparoscopy to investigate all the issues I've experienced over the years. In recent years, my periods have began with a very dark on and off blood. I'm not on any contraceptive because we are trying to conceive (although this is another reason I'm having tests - because we're 2 years with no joy and both healthy!). If you haven't already done so, id take a look at something called frozen pelvis which is to do with endometriosis and the types of pain that I believe I have. I doubt a lap will pick up the pain I'm having in what feels to be my nerves as it's a diagnostic lap and not going to be done by a specialist but if there's any sign of endo, they'll refer me on so we will just have to wait and see!

I just wanted to let you know that your not alone and I'm sat here right now with twinges and pain in my left side :( it completely debilitated me the month before last and almost had to go to A&E!

Xx

Faith27 profile image
Faith27

P.s the timeframe you have shared is exactly the same!! On and off and now it's more on than off and can come up at various times during the month. More often than not it's while I'm on my period xx

sarahkhan profile image
sarahkhan

Consult your Gynaec ASAP. So that they will diagnose the root cause of your pain.

Good Luck and Keep Posted

Takecare

StefaniaJW profile image
StefaniaJW

Sounds like left ovarian endometriosis, especially if pain peaks around ovulation.

I suggest you contact a specialised endo surgeon in your area (find one on the Nancy Noom facebook group) and only get a laparoscopy with him/her.

You could also get an ultrasound or MRI to check for endometriomas but only an experienced endo gyno or radiologist should perform it.

Kthack2019 profile image
Kthack2019 in reply to StefaniaJW

Thanks everyone for your replies. I have not been diagnosed yet. I have went in for an ultrasound with a regular gyno all they saw was just a normal cyst. I am not sure at what times of the month these symptoms happen as I do not get periods. Could the reason they havent seen anything on scan because they are not trained? I was also reading that it could potentially be in the pouch of douglas as well...

StefaniaJW profile image
StefaniaJW in reply to Kthack2019

It could be anywhere. A normal gyno will not be able to tell the difference between an endometrioma and a cyst from PCOS, say. If you haven't had your period in months it could be PCOS.

I suggest you get your hormone levels checked out to see if it could be that and consult an endo specialist in the meantime. These are your best options if you want to get to the bottom of this.

summerhass27 profile image
summerhass27

This post basically describes exactly what I'm going through. Lower left sided abdominal pain radiating to the left side of my back. Had it mildly and intermittent for the past 2 years but over the past 6 months has become pretty much constant despite birth control. It's awful. Ultrasound was normal. Went to an endo specialist who recommended higher dose birth control and if this doesn't help, then a lap. It is exhausting, scary, and just so hard to be dealing with this daily pain.

summerhass27 profile image
summerhass27 in reply to summerhass27

So hang in there, you're not alone!

introuble profile image
introuble in reply to summerhass27

They diagnosed you with endometriosis after the lap?

summerhass27 profile image
summerhass27 in reply to introuble

The endo specialist I saw told me he thinks it's endo but I haven't had a lap yet. He recommended I try a higher dose birth control dose first for a few months and if the pain isn't better, then will schedule a lap.

introuble profile image
introuble in reply to summerhass27

Ok ok

Have you had bad nausea before period?

I’m in pain now and nausea

Siduri profile image
Siduri

I have a similar issue. Low left pain very near my ovary, radiates into my back. The first time I had the pain was a few months after I had a laparoscopy and she removed a chocolate cyst. Since then I have had discoloration on my skin there (like a really deep bruise that took months to fade), painful intercourse, painful BM, and pretty much anything that requires me to use my pelvic muscles hurts when it is flaired up. If my low back is inflamed (I have an l5/s1 disc issue too) then that left "ovary" spot gets crazy painful at the same time. If it is very inflamed, even my flank muscles will grow very tight and painful up to my ribs and down my left leg.

I have seen doc over the past 5 years who haven't helped or even been able to explain the issue. More than one have implied I am making it up for pain medication or that it is all in my head. Another outright called it somaticized. Because , yup, I have the magic ability to think bruises onto my body. *sigh*

My only real guess is that I have a nasty adhesion attaching my ovary to other bits in there since there is a "pulling sensation" like if you pulled hard on a really big and sensitive hair, when I move. I believe it is attached at least to my bowel, from observing symptoms over many years. Another possibility, but less likely IMO, is that my surgeon cut a nerve back then, but the way that "nerve" interacts with my other organs does not quite make sense.

Unfortunately I am the only one who wants to deal with the issue. I have enough other health concerns that my docs have always given my pelvic/abdominal issues the brush off. If it is an adhesion, they say they will only make more if they surgically remove it. Sadly I have gained 50# and lost a lot of muscle since that surgery because I can't hardly exercise anymore. It hurts too much. Even intimacy with my husband has been ruined.

I don't mean to scare you with my experience, but more just validate your experience with this pain and warn you that there are those who will believe you are imagining it. Not all doctors, but a few tend to see endo complaints as "just part of being female. Deal with it."

I have learned that some physicians, when they can't explain a symptom satisfactorily, will accuse the patient of somaticizing their issues. It is disheartening. There are some truly wonderful physicians out there though. You just have to find them and get into their (usual overly packed) schedule.

I would suggest keeping a journal of your symptoms and anything else happening when they appear...what time, what did you eat, how painful was it (1-10), did you have a bm? Did you have gas? Pain with urination? Or intercourse? Were you menstruating or ovulating? Had you been physically active? Were you sedentary when it began? Anything that might possibly be relevant. Write it down and date it. Then bring the journal to you GP next time you see them.

Best of luck, sister.

Kthack2019 profile image
Kthack2019

Update:

I had an ultrasound yesterday ordered by regular GPS. She called to tell me that they found 2.5 cm cyst on left ovary and multiple cyst on right ovary. Being as she is just a go she is referring me to obgyn. She did not mention what kind of cysts or if they saw anything else. Pain is still pretty bad. I had a transvaginal and it was also quite painful. Any hints as to what's going on?

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