Is this familiar?

[purplemouse72]

Hi guys! I'm 18 and new here. I thought I'd see if anyone's had a similar experience to me. I've only recently started down the possible endo route with my doctor (got my first gynaecologist appointment mid Feb).

My periods vary in the severity of pain; some months are to the point of nausea. I often bleed through clothes/bedding. A few years ago I went through a spell where I would be woken up at night by awful period cramps and leg pains. Even so, I wouldn't class the cramps as the worse symptom I have, as nowadays they've been managable with painkillers.

Early in September 2021, I woke up and immediately felt a weird, almost tight sensation around my left kidney area. Within a minute I was in the worst pain of my life (felt faint/dizzy, really nauseous, arms and legs tingling). Long story short, I was admitted to hospital with a suspected kidney stone: but then was found clear of anything in kidney scans and urine tests. They concluded that I had hydronephrosis and sent me home.

Since that day in September until currently writing, I've not felt properly better once. What got me reading about endo was that I've noticed that these current symptoms I have worsen with about a week before/during my period:

- Pain and tenderness in JUST my left side. This can be in the area where my kidney is, under my ribs, on my hip and in my pelvis. It can be pinching/sharp or dull. Even when it doesn't hurt, I have the sensation something isn't right when compared to my completely normal right side.

- Dull pain down my left leg. It affects the thigh and knee; as of writing right now 1 week before my period it's particularly bad.

- Dull pain in my left arm/shoulder. Like with my leg, it's the sort of ache I get on my period, except now it's not exclusive to that time.

- Upset stomach/bloating/nausea. Bit hesitant on this one as I do also have IBS, to complicate things further!

- Generally feeling really fatigued/off-colour (more than before this pain started)

Again, I haven't been diagnosed, and am completely in the dark here. In December I had an ultrasound of my bladder/kidney/ovaries and had no issues or cysts picked up.

It may not even be endo, but I've been really struggling this month particularly, and wanted to at least see if anyone relates! I'm at the stage when I'm almost used to the problem.

Has anyone here had this sort of experience?

[Judy92]

Hi there,

Sorry to hear of your situation. Some of your symptoms are similar to mine, but not all of them. As you probably know Endo symptoms are very similar to other conditions like IBS which you have already said you suffer with.

I picked up on the fact that you said you have pain on the left. It might be worth investigating for Diverticulitis as well. Can never be too sure. This may include an MRI on your tummy and a small camera (bowel meal I think it was called). That was certainly the case for me.

Take care.

[purplemouse72 in reply to Judy92]

Hi, thank you so much for the advice! I had been aware of that possibility myself, so will definitely look into it further

Take care!

[Sana12]

Hey,

Urgh, that sounds awful!! I actually have a lot of the same symptoms as you, especially with pain down the leg that worsens before my period. I actually had an ovarian cyst prior to being referred to the gyna which self healed. I was in so much pain and i literally couldn't go to uni or work so was pestering my GP non-stop. Because of my symptoms, I was then referred to a gyna and I am awaiting a laparoscopy.

If you are really struggling, just keep pestering the GP and try to get proper help. It can be a long process, but you've just gotta keep at it!!

[purplemouse72 in reply to Sana12]

Hi, I'm so sorry to hear about your situation! Thank you sm for input and advice; pestering the GP is definitely worth it as you say! Good luck on your laparoscopy

[Jane884]

Hi purplemouse,

All of your symptoms can be explained by endometriosis, that doesn't mean that it is the cause of all your symptoms though. I do think you have endo and it's the cause for at least some of your symptoms.

All of your symptoms are the same as mine, apart from I do have some others and I don't have the ibs, but my symptoms can worsen on a full stomach and painful bowel movements during a flare-up. My kidney area pain (loin pain) is mostly on my left too. I have just been diagnosed with ovarian and bladder endo, as well as some in my pelvic area and possible adeno. I had some back and loin pain on and off for a year but always suffered with sciatica throughout my life (or at least I thought) but I started to notice it would come a week or more before my period and then once my period started my back would be better. I had also noticed I was needing to wee more urgently. Then one night, last February, back pain started and and I have been in pain everyday since from either my back or my pelvis. Within two weeks pelvic pain started, and then leg and hip pain followed by shoulder pain (it's on my right, and I don't know if it's related). I also have some pain during or after urination and bowel movements, I get stabbing pains in my vagina and some burning in my left labia. Major fatigue, and bouts of nausea. All this is worse before and around my period and ovulation, but my pelvic pain is chronic, and the other symptoms tend to come and go to some degree throughout the day, everyday.

Everything looked fine on my ultrasounds, bloods and urine. I was treated for urine infection and ibs I didn't have, my gynae said my symptoms didn't sound gynaecological and maybe I have fibromyalgia as I have pain in "too many places". The same gynae found my endo after I basically begged her for a laparoscopy. I knew I had endo, I'd done so much research, some of my symptoms couldn't be explained by anything else.

I don't think the endo found so far explains my loin pain though. I think ureteral or kidney endo (most likely the former) explains it better and I'm going to get this investigated next. FYI ureteral endo is almost always found on the left side! And is often found to be the cause of hydronephrosis where no issues can be seen on a scan.

Regarding your shoulder pain and pain under your ribs, that may be explained by thoratic or diaphragmatic endo. The nerve for your shoulder and part of your diaphragm enter your spinal cord at the same place and pain signals get crossed.

Sorry for the long post, but your presentation is so similar to mine, I felt I had to give you the full run down! I hope some of this has helped, and really hope you get some answers soon. Feel free to message me, I'll help in anyway I can x

[purplemouse72]

Ahh this is so so helpful— thank you so much for taking the time to explain your experience I'm really sorry to hear about it, and it's great that you persisted in getting the investigation needed. All of this is particularly interesting when I compare it to my own symptoms, and I definitely have some pointers now of where to look into specifically! Again, thank you for this reply and the support! x