What is causing my pain?

[Mandy876]

Hi,

I'm hoping someone might be able offer me some suggestions about tbe cause of my pain and bleeding symptoms.

A brief overview: I'm 39, haven't ever had particularly painful periods and have two children, conceived quickly (in 30s).

Mid cycle spotting started in my early 20s and mild left side pain (near ovary), and occasional pain in left vaginal wall during sex. Cervical polyp removed and lap performed. Found some endometriosis but endo specialist surgeon said in his opinion it was not cause of pain, locations etc. didn't match up. He noted and removed some adhesions and he could find nothing else. Minor pain and spotting continued intermittently into 30s, periods fine but ten days due to 2-3 spitting before and after.

Two years ago randomly one day I started having vaginal buring/aching on left side. Thought it was a UTI (would have been my first) but tests negative. All STD tests neg. Pap fine. The occasional spotting (not ovulation spotting) has become more frequent. I had gone back on the pill after a few years off (preg/feeding) about 6 months prior to this and strangely experienced a lot of nausea and had to take meds to stop this for a week or so. It was like I was reacting to tbe hormones. Also strangely, if I skipped sugar pills I still got light period dr said I couldn't count on pill as birth control if my body was reacting like this to it.

A few months after pain starts I see gyn. When he hears that I'd had a lap years ago where minor endo had been seen, he immediately recommended another lap. This seemed odd to me a I don't think I have typical endo symptoms. Daily mild pain now left vaginal wall and sometimes perineum and a is and left buttuck and hip aches/burns. Disappears when I exercise and move around a lot, worse when sitting down. Lap finds no endo but a lot of adhesions attributed to infection post c-section. These are all removed. Some milk inflammation noted but nothing else. Surgeon is puzzled. Suggests pudendal neuralgia but notes the onset of my pain with no recent birth or injury is odd. Does MRI as said their could be 'hidden pocket' of endo but MRI all clear.

I go off pill. Makes no difference. Over next few months periods get longer, not heavy at all but spotting from about day 20 until proper period starts on day 28, last 4-5 days then 2-3 more days spotting. Spotting/light bleeding at start of period is odd. I get mild back ache and mild period pain (uterus) and the bright red blood (light - panty liner amount but more than just wiping) and that might last one or two days then bleeding and period pain disappear for 1-2 days then reappear off and on until my proper period at day 28. Vaginal wall pain that is constant is a little worse during period but not severe. I don't take pain killers for constand low level pain for this long is pretty horrid too. Can't sit comfortably at all, driving is painful, can't have sex etc. bleeding more than half the month.

Another doctor did hormone tests which were pretty much normal. Progesterone ok, one Estrogen a tad high, testosterone low.

Another could find nothing wrong and said my spotting must be hormonal and my pain a seperate problem either a nerve problem (pudendal neuralgia) or tight pelvic floor muscles which were noted. Suggested Mirena which I resisted but am getting desperate enough to try.

I wondered if this could be brought on my extreme stres as it was a difficult time when this began and I was also differing from mild anxiety and depression but doctors said no.

I've also noted that my cervix always feels wide open, squishy and lumpy but none of tbe doctors have ever noted a problem with it. Neither my cervix nor the area behind it are painful. Neither is my abdominal area.

So does anyone have any ideas what could be the cause of left vaginal wall pain and long light periods? Polyps? Endo? Erosion? Hormone imbalance? What else? It seems like I've been checked for everything and using Mirena to try and cover up a problem doesn't sit well with me.

Any ideas or advice greatly appreciated

[Starry]

Have you investigated interstitial cystitis or vulvodynia ? both can accompany endo as associated conditions. It could be referred pain from endo ( despite your surgeons opinion) or nerve damage, these aspects still seem quite poorly understood imo. I have endo and had prolonged periods rather than heavy so I'm not sure that is an indicator, our periods do seem to change as we turn 40, I spose hormones are behind it.

I had Mirena. It helped with period pain in that I don't have them now but it has aggravated my Dyspareunia I think. Although after 4 months it's finally kind of settled I'm still planning to remove it in case it's causing some of my symptoms. I would think about trying the progestogen pill first off to see if it's progestogen your body is needing to improve its balance. I have a deep nodule causing back ache that has attached my bowel to my cervix but something like that shows on scans and internal exams.

[Mandy876 in reply to Starry]

Hi, thanks for your reply. Vulvodynia is external pain in the vulva area and IC involves frequent urination, and I don't have any of those symptoms. I'm really conflicted about the Mirena. I don't like the whole idea of having something inserted doesn't sit well with me. Would the progesterone only pill work the same? Thanks again.

[Starry in reply to Mandy876]

I've only had the mirena. It's meant to be more effective due to location and not passing through your digestive system. It has settled just about but it took a good 3 months and wasn't pleasant but then again none of our treatments are. It depends on the pain level you have and severity so take advice from your surgeon get the facts then make your decision usually people start with CP or mini pill first then try mirena or zoladex when unsuccessful.

Good to eliminate those others. i mentioned ( i get burning and pressure senstions with then so thought worth mentioning) but you seem clear they aren't located right, so odds are it's just straight endo adhesions or nerve issues.