chronic recurring PID

[hannahb05]

just looking for some advice.

I have been struggling with chronic PID for the last seven years. I have been gaslit by the NHS, suffered extensive delays and been told that it can’t be PID for this length of time I know my body, I know when I’m dealing with infection. I have had a laparoscopy, and an ultrasound within two years of each other which shows PID but yet they dismiss that it can keep coming back. I have tried just relying on heavy duty painkillers with no relief, but as soon as I take one particular antibiotic, my symptoms go away.

I just wanted to ask if anyone has had a hysterectomy for PID and this has resolved the problem of the flares? This feels like the only solution now as a recent ultrasound showed extensive adhesions which they will probably say is endometriosis but I have none of those signs and feel immediately better on antibiotics. I believe there is infection trapped in pockets inside.

I would be super grateful if anyone could share their experience and whether they had a hysterectomy to resolve

[Popcornaddict]

I had a full hysterectomy for my PID. It was my only option in the end because everything else failed. I still have pelvic pain due to Adhesions. As for any pelvic infection which needed antibiotics I have only experienced twice since the hysterectomy back in 2015.

[hannahb05 in reply to Popcornaddict]

Thank you for your response. Did you ever find out what bacteria caused it. Had you tried IV antibiotics? Im at that stage too with everything else failing. Only antibiotics take away that pain, but yet they dont fully believe its PID. Ive been dealing with this 8 years and its now become unbearable

[Olive12345]

I’m in a similar position. They won’t believe me because it started after a C-section and because they only found evidence that there was concept an infection not that it’s still ongoing. I would have antibiotics then three months later it would be back. I’ve had a few lots of two weeks of double antibiotics three months apart from each other and the pain isn’t coming back as bad this time. According to the nhs guidelines it should be possible to get an infusion of antibiotics but they tell me I can’t have this. The annoying thing is, I told the dr I had an infection at my six week check after I had my baby and I was told I don’t because I don’t have sepsis. Fast forward and I’m infertile, I’ve had recurrent miscarriages and I have had poorly controlled lupus…. Although that has improved since the last antibiotics so fingers crossed!

[hannahb05 in reply to Olive12345]

I’m so sorry about your infertility, what an awful situation. Unfortunately there is a lot of gaslighting going on with the NHS, they are very weak to dismiss how you feel and listen to the symptoms and take on board what you’re telling them. Did they tell you what your infection was that they found?

[shilohpup]

I had endo and adenomyosis with PID. Antibiotics always made me better However the more infections the more adhesions so I had hysterectomy at age 32. What a difference night and day for the better no more infections I still deal with adhesions and keeping my body flowing daily from constipation issues with adhesions as you know is still painful but everything got better for me. I suffered from age 12yrs with Pelvic pain excruciating now I have my life back. Just my own experience. Best of Luck!!!

[hannahb05 in reply to shilohpup]

Thank you so much for your response, its really reassuring to hear its given you relief from everything. Gives me a little hope.

I have been dismissed so many times, I know my body and this all started with PID and no adhesions initially, now continuous flares over 8 years which i know is not endo or adeno but infection and recent scan showing adeno and adhesions everywhere. Its causing so much damage but im struggling to get any follow up appointments, having to wait a year for any type of follow up is making the situation worse.

[shilohpup]

Understood completely. I have had 9 lapaoscopies over the yrs. I received my life back{ when against my mothers and most friends advise against it} with my hysterectomy at 32. You know how you feel no one else does. Yes I still deal with adhesions gladly because the PID with chronic infections and endo was 10xs worse for me than adhesions alone. I never knew what a good sex life was until after I had my hysterectomy. I would have never known if I didnt have my surgery. Sex was very painful for me. Hang in there it will get better!

[shilohpup in reply to shilohpup]

Im sorry I forgot something .When I was dismissed & gaslit by many male Drs in my home town I finally looked up a Female specialist out of Gig Harbor WA in Endo and adeno. She knew instantly my issues. I was told they cant diagnosis adeno until they get you in surgery because its in -between the muscle layers of the uterus and causes more pain than endo is what I was told and then It turns out I had both when they did biopsies in surgery but my dr knew she just knew I had it and I did. If you can find a specialist in Endo and I know there is a good one at Stanford in CA for instance . Im not sure where you live but mine I love her she is in WA but Im sure there are lots but you have to search for them under specialties and be willing to do whatever the experts tell you to do not well meaning friends and family. Its your life your body & health so its hard but dig deep. You deserve it!! You have the answer inside of you!! I am holding positive thoughts for you!!!! Be strong! FYI if you like My Drs name is Dr. Cindy Mosbrucker 11505 Burnham Dr ST 302, Gig Harbor Wa 98332. # 253-313-5997. is my DR. She is kind & a straight shooter like me lol! May be worth a try.

I lived in CA at the time and forced myself to believe I was worth her services, saved my pennies and went. I had ins but . not everyone does so ck out places close to you first You never know someone may be just around the corner ready willing and more than capable of treating you! Drs work for you. Sometimes we need to fire them and move on to one who is compassionate and understanding and an expert. As you see these health issues run deep in me. Ill help wherever I can. Fearing constant pain in not an option. We must heal!

[hannahb05 in reply to shilohpup]

Thank you, im in the UK. I have messaged you