Pelvic inflammatory disease- please help

[Scaredelephant]

Hello, I posted a few weeks ago with no responses so I thought I'd try again as I am really suffering both physically and mentally.

I got pregnant with my 2nd back in March. For the first few weeks I was very happy. About 7 weeks in, I fell into a horrible depression that I assume was due to my hormones. I could not leave my couch, I cried all day long, and was not caring for my 3 year old son (whom I was quarantined with) like I should have. I had never felt so low in my life. I came to the conclusion (not in my right mind) that I needed to terminate the pregnancy for a list of reasons.

On May 23 at 9 weeks I underwent a surgical suction aspiration. About 2.5 weeks later I started with the pelvic pain. My OB was not concerned and prescribed me doxycycline BID for one week just in case. I had an ultrasound the next week that was normal. The pain did not go away and my doctors agreed to put me on flagyl BID for 10 days and give me one more week of doxycycline, and after that was completed finally agreed to give me a ceftriaxone shot. They refused to believe that I may have PID due to the fact that I do not have any STDs but I pushed for treatment just in case.

About 3.5 weeks after the termination (in the middle of my antibiotic therapy) I got my first period which was very strange and more like regular blood, very heavy and lasted for almost 10 days. The pain persisted. My doctors shrugged me off and did not seem concerned. About 5.5 weeks post termination I got frustrated and went to the ER. They did an ultrasound which showed I was ovulating and had a large 3.5 cm dominant follicle cyst in my right ovary, and my endometrium was already 15 mm just halfway through my cycle (it had been 8mm at my previous ultrasound the day before my first period) , and my uterus was now 10.8 cm when the ultrasound 2.5 weeks before it was 9 cm.

My OB STILL was not concerned and said the numbers were within normal limits- they told me they did not know why I am having so much pain and tenderness, and that since I had antibiotics (albeit out of order and with a gap between the 2 weeks of doxy) that if there were any PID it would be resolved.

I am now 10 weeks post termination. I still have very low pelvic pain and tenderness to touch or palpate, shooting pains on both sides in the ovary area, along with pain in my very lower back and hips, and a numbness/tingling pine and needles in my left lower pelvic/vagina/buttocks that will go partway down my left leg. The numbness is worst after a bowel movement. Some days are worse than others but overall it is worsening. The right sided pain has been especially bad these last few days. I also seem to have intermittent increased urination and sometimes burning but have always tested negative for urinary infections. The pain is not always the same, but it is there every day.

A different OBGYN at the practice just put me on a 14 day course of amox/clav (Augmentin) which I just finished and asked me to start a birth control pill to keep my endometrial lining thin so there is less for bacteria to feed off. I am 2 weeks into this with no changes. I have not been offered a laparoscopy. I am having a 3rd ultrasound tomorrow and I am so scared!

I know my body, and know that something is going on- I have had a brain tumor, an occipital artery aneurysm and resection at 31 weeks pregnant, and thyroid cancer all of which I had to be my own advocate to get answers and resolve the problems.

I am so scared that whatever is going on is causing inflammation/infection in my tubes and causing infertility, and we really truly want another child. I hate myself for what I did- it is not what the normal me wanted, and to think my hormonal depression and making a horrible decision may stop that from ever happening kills me. Some of the posts on here have me so scared that this will never go away.

Any insight or support is truly appreciated!!!

[Moon_maiden]

Hi

So sorry you are going through this, do you have any support at home?

Have you ever considered endometriosis? It doesn’t show on ultrasound scans, unless really know what to look for, and MRI only if it’s deep. The usual way to confirm is laparoscopy.

What about a different gynaecologist who is a bit more open minded and not fixed on ‘normal’ levels.

Hormones play merry hell with emotions. I was offered various things last year and turned out to be Endometriosis and fibroids.

[Scaredelephant in reply to Moon_maiden]

Hi there and thanks for your reply! I have not considered endometriosis only because my symptoms started so soon after my procedure. I just wish I could stop the pain!

[Moon_maiden in reply to Scaredelephant]

Might be an idea to keep a diary of symptoms, pain, etc., and possibly think about a different gynaecologist.

Endometriosis can sometimes cause constipation and effect bowel with pain. It’s one of the reasons doctors mix it with irritable bowel. It does me.

Research will give you some guidelines. If they haven’t specifically looked for it, they could easily miss it.

I’m taking various painkillers, more recently amitriptyline for nerve pain, I think this might be beginning to work.

Last year loads of tests for uti, most negative. Since diagnosis I’m more aware of what to look for. This year had far less tests, one positive.

[Feminology]

My heart goes out to you as it sounds like you’re having an extremely traumatic time.

You do know your own body and it’s good to keep fighting if you know something isn’t right! Even though it’s shit, it is good that you are having another ultrasound as this will pick up if there are any signs of an abscess, which happens when PID is progressed. They should also do a blood test to check your iron levels and inflammation marker as these are key indicators of infection. My iron count tends to drop before my inflammation marker increases, so it could be a helpful early sign. From what I have discovered, gold standard treatment for PID is a combined course of Doxycycline and metronidazole, and usually this would need to be taken for at least a couple of weeks if not being given an initial dose intravenously. PID is unlikely to respond to other antibiotics from what I understand.

From what you described symptom wise, some of of it does sound quite similar to what I have experienced with PID. My pain was also ever changing and manifesting in weird ways. It also sounds like your ultrasound could have been picking up inflammation if parts of your reproductive system were enlarged. However, your uterus etc has been through a lot recently with the surgical suction aspiration. I do not have experience with this but your body has been through some physical trauma which could put it out of sorts for a while. Regardless of whether it is a problem due to this or PID, it is not okay that you are in so much pain all the time so they have to do everything they can to help you without dismissing you!

Most importantly for anyone who may read this, they are full of shit saying it is unlikely you have PID because you don’t have an STI. They said the same to me, but I researched it and actually only 1/3 of PID cases are caused by an STI. This was one of the main reasons mine was overlooked and I’m sure this has happened to so many other women.

Hope this is helpful! Stay strong, as better days are ahead and good luck with your scan! I hope they manage to get to the bottom of what’s happening soon!

[Scaredelephant in reply to Feminology]

Thank you! I did the doxy/ flagyl in the beginning with no results.. I'm really praying someone can help me soon as these doctors are not taking me seriously.. if it's not too personal to ask, did your PID affect your fertility at all?

[Feminology in reply to Scaredelephant]

It could be that your initial doxy/flagyl treatment wasn’t for long enough to clear it up as I had a 2 week course that didn’t work and then needed to have a stronger dose for 1 month. Otherwise if it’s not responding to these antibiotics I guess it may not be PID.

Absolutely fine to ask about fertility! As the first time I had it was left for 9 months, by this time I had a turbo-ovarian abscess in both ovaries/tubes and my bowel had wrapped around everything so I have a frozen pelvis full of adhesions now. Apparently my fertility is still okay technically but I’m at a very high risk of ectopic pregnancy and other pregnancy complications due to the scar tissue. Although I should soon be having surgery to try and resolve some of the damage. It may be I lose an ovary but as long as I have one i’m all good. I had an extremely severe case of PID and recurrent so from what the doctors told me it needs to be quite progressed for it to really impact your fertility.

[Scaredelephant in reply to Feminology]

Are you still having pain? So sorry to hear you have been through so much with this. What inflammation markers do you get drawn, is it your white blood cell count?

[Feminology in reply to Scaredelephant]

Thank you! Currently I have no pain other than the odd pinch depending on where I am in my cycle. Yes I think it is the white blood cell count they’re going off.

[Hidden]

I’m sorry to hear you are going through this. Can I ask if you’ve considered whether this could be nerve damage. Surely if PID was present this would have cleared up with the very strong antibiotics already prescribed? Can you have PID without any infections being found on swabs and urine samples? Can you push for mri and maybe a cat scan which should help complete the picture about what’s going on. Your story is very similar to mine. Three years on with all tests completed and a laparoscopy done I’m still in pain. I’ve seen various gynes and also colorectal surgeons. Nerves seems to be my only diagnosis which to me has always been a diagnosis because they don’t actually know. But like you I know something else is wrong.

[Scaredelephant in reply to Hidden]

PID does not always show up on swabs, and not urine unless your bladder is affected.. what could cause the nerve damage? What are your symptoms and did the laparoscopy show anything?

[Hidden in reply to Scaredelephant]

I too had vacuum procedure at around the 10 week mark. I knew that evening something was wrong. I felt out of sorts hot and almost shaky. My body and mind had been through a lot so assumed it was to be expected. I was back at the clinic 2 days later and put on a course of antibiotics then sent on my way as according to them the procedure had been text book and they didn’t want me back again. I was in incredible pain still two weeks on and collapsed at my Drs who sent me straight to the hospital. Again had swabs samples and bloods sent off and was put back on yet more antibiotics a stronger course for two weeks. There was no change in pain levels. I was then given and mri ct scan and pushed for a laparoscopy. Nothing was found. Nothing had ever been found on any of the tests I’ve had. I’m still in pain.

[Add-on]

The pain you are describing could be associated with Pudendal Neuralgia, which is frequently brought on by any abdominal procedure. PD gives you pain in the bladder, urethra and perineum, and burning pain in the perineum and back passage and sometimes in your buttocks. (Not inclusively - people differ in the pain discomfort range). I would advise that you go back to your GP, or another GP) and ask either for a urogynacologist or a Neurologist who could assess you for a damaged nerve in the pelvis. I'm perturbed that the doctors should think it is PID or an infection. Did they say what pathogen? and why has it not worked, since the pathogen should have been tested for the most effective antibiotic. Waiting times are excessively long at the moment. A Specialist Physiotherapist may also be able to help you, since they treat people with pelvic problems to relieve pain, and are therefore very familiar with the presentation of various pelvic problems. I'm so sorry to hear of the problems you are having, and hope that you can soon find relief.

[Scaredelephant in reply to Add-on]

The aspiration was a suction procedure done vaginally, so not an abdominal procedure.. would that also cause pain in my pelvic area and sides along with lower back pain?

[Add-on in reply to Scaredelephant]

It’s worth bearing in mind. My daughter mentioned someone today who had her coil removed and it has left her with pelvic pain. The objective is to delete the no no’s cos this helps to difine

[Add-on in reply to Add-on]

To define a shorter list of strong possibilities.

[Cinnamonan]

Hope you’re ok, sounds like you’ve been / going through a lot.

It may be worth changing gynaecologist or seeing another specialist -

I presented with PID last year, and my GP was adamant it was an STD, they ran a whole load of tests that came back negative and put me on 4 weeks of various antibiotics, she couldn’t understand and said it was definitely a STD- it was actually my IUD that got stuck in my cervix- antibiotics did nothing to help because they didn’t take the problem away- so I would keep preserving and see someone new if you can!

I saw 2 gynaecologist before I met one that was able to help, it’s about finding a consultant who works for you.

I hope you get some resolutions real soon.

[Scaredelephant in reply to Cinnamonan]

I do need to find a provider willing to listen but is so hard with working full time, the pandemic etc. Are you feeling better?

[Cinnamonan in reply to Scaredelephant]

Try not to put up with clinicians who are not experts or don’t give you the care you need. Even within the gynaecologist community they have different specialisms, so it’s about finding one who can help you with your particular situation.

Thank you for asking, I had an operation for removing a cervical polyp and adhesions - the adhesions won’t go away, but symptoms are much more manageable and I have answers and more understanding

Hope you get the support you need

[Swimminginexuma]

When I had PID caused by bacteria and I was prescribed antibiotics, I learned a couple of things, you need to let yourself body rest and heal, the inflammation it’s like a wound you need to let it completely heal, the antibiotics help of course, but you need to wait and build some goos bateria, you can cut sugar because bateria thrives in it, take a probiotic, and let your body heal and try not to have sex; you will feel better soon and And once you are completely fine you will be able to have babies again.

[Scaredelephant in reply to Swimminginexuma]

I am trying to rest but it has been many months and many antibiotics and I seem to only be getting worse!

[Konagirl60]

First of all, I can feel your unease and sheer panic. Try not to stress out and stay as calm as possible. What’s done is done. You’re only human and everyone makes wrong decisions sometimes. Staying in anxious mode will affect your immune system negatively and won’t help matters. Have a good cry and move forward. You’ve got to make healing number one.

Do you have a fever? I ask because that’s usually a sign of infection.

Try drinking homemade ginger tea. Ginger is great for treating internal pain. Mint tea will help with digestion, moods and sleep. Are you able to sleep?

Cook your food with fresh garlic, turmeric and cayenne pepper. These are all natural clotting compounds.

Keep your bowel movements soft. Drink plenty water and incorporate kefir into your diet to keep your gut microbiome healthy. A teaspoon flax seeds in a 1/4 milk or juice every day will keep you moving.

If the numbness persists, it could very well be your pudendal nerve or genital femoral nerve has somehow been affected by the suction procedure. We’re you given pain medication before the procedure?

If the tingling gets worse and you start to feel burning, it could be nerves. You‘ll need to see a neurologist. Keep us posted.

[Scaredelephant in reply to Konagirl60]

The numbness/pins and needles did not start until 3 weeks or so into the pain. I do have a low grade fever, but I have been sick with a respiratory infection for the last 2 weeks- the cough has gone, but the low grade temperature remains which worries me. I was given something in my IV prior to the procedure I believe, but I elected to have it done under sedation.

[Konagirl60]

Try the ginger, garlic, cayenne etc in your diet. Kefir is amazingly healthy for our digestive system. Keep hydrated and get some rest.

[lucristi]

have youbtested for ureaplasma urealyticum and mycoplasma genitalium? they do produce a lot of inflammation possibly creating nerve sensation down the legs. If susceptible to doxy the course should be 3 weeks min.

[Facingreality]

Hello, Scaredelephant.

I can imagine how you feel. I hope things worked out for you and you are much better now.

Please keep asking questions and demanding tests and answers. Seek second (and third) opinions.

Years after an ill-advised procedure I am grappling with the consequences of trusting a doctor and not asking all the questions I wanted to ask.

Sending you positive thoughts.

IMO, women are not given enough information about the risks of some termination procedures and infections, etc, and their possible impact on fertility.

(And I recently learned that long term use of birth control pills may cause lining problems later when trying to conceive, not sure if true.)

I suppose if awareness campaigns succeed, it would mean less business for fertility clinics.