Author Topic: A bit graphic but a question for other women  (Read 2793 times)

LovelyDay

  • Jr. Member
  • **
  • Posts: 78
A bit graphic but a question for other women
« on: July 27, 2015, 02:46:00 PM »
Recently I was treated for a severe flare-up. During a long exam about my various symptoms - they found my cervix was bloody and causing me pain though it was not my time of the month. They have ruled out through testing all the STDs that could cause it.

Has anyone else experienced or spoken with someone who has experienced this? They said it's probably PID but I'm very confused about that as that is a sexually transmitted infection and we have ruled those out.

If it's not PID... I do not want to take the super strong antibiotics for it because they will make me sick. Does any WOMAN with SS have some variation of this that isn't a bacterial infection?

Also no one will give me painkiller though this is probably the first time I've been asking for it. How can a doctor look at that and not know it's very painful?
anti-SSA, anti-SSB, Primary Sjogren's Syndrome, Interstitial Cystitis

Find a place inside where there's joy, and the joy will burn out the pain. ~~Joseph Campbell

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13513
Re: A bit graphic but a question for other women
« Reply #1 on: July 27, 2015, 03:07:09 PM »
A pelvis inflammatory disease can also be from any other infection. Generally.l they try to culture in the vaginal vault to see if they can isolate the bacteria causing the infection.

Also, the blood on the cervix could be caused by dryness of the mucous membranes of the cervix caused by Sjogrens. For some reason doctors tend to forget that the vagina can be affected by Sogrens also.

The dryness in the vagina can make one at higher risk for infections in that area. The use of tampons during a period is a good breeding ground for infections. In view of this infection and treatment with antibiotic you might also want to have some blood work to check if your immune system is up to par.

Remember that toxic shock syndrome is still possible from using tampons during periods. Lack of normal mucus and enough mucus in the vaginal vault makes one more prone to tissue damage when inserting tampons.

You infection is obviously not toxic shock syndrome as that is an infection that hits hard and fast and needs intensive medical treatment in the hospital. Just ask questions of your doc and make sure you get answers. If he can't help then you might want to see an infectious disease doc or an immunologist. Good luck and keep us updated. Irish

LovelyDay

  • Jr. Member
  • **
  • Posts: 78
Re: A bit graphic but a question for other women
« Reply #2 on: July 27, 2015, 04:13:54 PM »
My first symptom of SS was probably in the vagina. I've found sex to be painful for a pretty long time. That's really good to know about tampons! Also I thought it was an oversight they didn't talk about whether it might be from the SS.

Thanks - LovelyDay
anti-SSA, anti-SSB, Primary Sjogren's Syndrome, Interstitial Cystitis

Find a place inside where there's joy, and the joy will burn out the pain. ~~Joseph Campbell

LovelyDay

  • Jr. Member
  • **
  • Posts: 78
Re: A bit graphic but a question for other women
« Reply #3 on: October 02, 2015, 09:58:38 PM »
Updating this to say this:

Three different doctors three different diagnosis.

I'm immensely frustrated with women's healthcare in this country now. I went to different physicians about this and I was told that it was most definitely high risk HPV because of its presentation and that bumps on me were HPV.

Then I went to a different doctor who was like heck no that's just a very irritated vagina and the bumps are from your severe dryness.

anti-SSA, anti-SSB, Primary Sjogren's Syndrome, Interstitial Cystitis

Find a place inside where there's joy, and the joy will burn out the pain. ~~Joseph Campbell

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: A bit graphic but a question for other women
« Reply #4 on: October 03, 2015, 08:04:57 AM »
LovelyDay,

I would suggest that a UroGynecologist experienced with SS might be a good next choice. That is the only doc I saw (among 2-3 regular Gynecologists) who understood what Sjogren's damage can be done to a woman, vaginally.

Good luck..I have lived your pain &I know how intense it can be. It used to put me in tears, & I bled also.

Take care.
SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Judie P

  • Hero Member
  • *****
  • Posts: 657
Re: A bit graphic but a question for other women
« Reply #5 on: October 03, 2015, 11:33:53 AM »
Did they take a culture for HPV and a biopsy of your cervix?  I don't want to scare you, but I had a bloody cervix as well about three years ago.  I was HPV positive and had early stages of cervical cancer.  Because it was early, I was able to get the cells frozen and have had no problems since.  They told me the HPV was positive from all the anxiety and stress I was going through at the time.  I also have a very high estrogen level at the age of 64.  At the time, no one knew I had primary SJS.  I am sure that would have been a factor.  It is a good thing they are catching this now before it turns into anything you don't want.  You will be okay.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

aussie mum

  • Hero Member
  • *****
  • Posts: 604
Re: A bit graphic but a question for other women
« Reply #6 on: October 03, 2015, 01:47:27 PM »
I don't think any Dr can diagnose what is causing this without a biopsy.

I had suspicious cells on a pap smear about 20 yrs ago and was referred to a sexual health unit at my local hospital. I had a procedure called a colposcopy and they took a biopsy. Luckily I escaped the big C.

20 years on, I still tend to bleed from my pap test. It wouldn't surprise me if it's all related to the AI disease process.

Please see a specialist.

Wishing you all the best.

 
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

amberk

  • Newbie
  • *
  • Posts: 11
Re: A bit graphic but a question for other women
« Reply #7 on: October 03, 2015, 06:56:16 PM »
I had a friend who was just diagnosed with HPV, they have to do a biopsy to diagnose that, it's not just a matter of seeing a bump and saying this is HPV.  Doctors really irritate me sometimes, the way they treat their patients.  A lot of them like to throw out scary words or worst case scenarios before they have even gotten to the root of the problem.  My little sister went to the dr and they told her that her symptoms sounded like she may have leukemia, and turned out she just has really bad acid reflux.  My mom even had to undergo a bone biopsy, pretty painful, with nothing wrong.  I don't remember what the outcome of it was-it was something equally ridiculous and she should have never had to go through that.  My point is-a lot of doctors out there are idiots and you really got to choose carefully!!
sjogrens, raynauds, vasculitis, osteoarthritis, rheumatoid arthritis, prothrombin gene mutation, plaquenil, warfarin

susanep

  • Hero Member
  • *****
  • Posts: 3670
  • Each Day Is A Miracle !
Re: A bit graphic but a question for other women
« Reply #8 on: October 03, 2015, 08:32:33 PM »
I hope you do find out soon what it is. I am 62, and still have a period, but even during the rest of the month, I have itching from tiny very fragile bump type things that a doctor 20 years ago told me what they were, but I am not sure of the name.

I think it's like the lichen planus or lichen sclerosis. When using a pad, just the fabric against my skin causing me such itching. I am always having to use itch relief cream. I need to get in to a gyno, and just haven't yet.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

LovelyDay

  • Jr. Member
  • **
  • Posts: 78
Re: A bit graphic but a question for other women
« Reply #9 on: October 04, 2015, 04:43:23 AM »
What pisses me off after seeing someone for another opinion is that I informed my new potential partner of it and now... I might not have it? Because prior to the visit mid last month I had been told it was the dryness causing a sort of shrinkage and hardening of the tissue by a specialist and that it also would present with bumps and bleeding.

Then I came with that information to another doctor and they said no I can tell looking at this that you have some strains of HPV. At that time it was very inflamed and obvious looking. They gave me the medication (which took down the couple of bumps to a tiny size) for it I followed up with a THIRD physician who said.

No that's the dryness and something called ganglion cysts. That the medication worked for it is just because it calmed the inflammation.

I want to scream because it's not fun times to tell partners I have something then look like a crazy person saying no wait this other doctor says I don't. I don't want a biopsy but I just want a static diagnosis. I guess... I'll request the biopsy.
« Last Edit: October 04, 2015, 04:49:34 AM by LovelyDay »
anti-SSA, anti-SSB, Primary Sjogren's Syndrome, Interstitial Cystitis

Find a place inside where there's joy, and the joy will burn out the pain. ~~Joseph Campbell

aussie mum

  • Hero Member
  • *****
  • Posts: 604
Re: A bit graphic but a question for other women
« Reply #10 on: October 05, 2015, 01:42:40 PM »
I feel you won't be able to get a static diagnosis without a biopsy.

The procedure I had for my biopsy (Colposcopy) wasn't too bad at all. Practically identical to a pap smear test.
I'd say they used same equipment used for access, but instead of taking a swab, they take a sample of tissue. No anesthetic was involved and no stitches. I can't remember it being particularly painful.

Take care.

Aussie Mum
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D