My only symptoms are pelvic pain and bloating/pressure that goes up my ovaries and into my lower back.
Firstly I was given antibiotics and told to treat it as PID, however all my STD swabs came back clear. My symptoms seemed to go away.
A few months later the symptoms reoccurred and I was given antibiotics again. The transvaginal ultrasound was painful but showed as normal and no pus cells. Again I took STD tests for 28 different bacterias and all came back normal.
Recently the symptoms came back again! Same antibiotics were prescribed but I was referred to an NHS gyno. He told me I should get PID out of my head because it was impossible if everything keeps coming back clear. He took more high cervical swabs and again these came back clear.
Since then I’ve had the GNRH agonist injection which made my symptoms go crazy for the first 3 weeks but since then I’ve had no pain.
Saw a Nook doctor who says there is a ‘reasonable chance’ I have endo and has booked me in for a lap.
I’m worrying that I’m paying so much money for a lap and it could turn out just to be PID?!
Since my swabs are clear and it keeps coming back, can I really forget PID as an option?
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missusbroc
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The fact you responded to the GnRH agonist is a good sign that whatever is causing the pain (and it really does sound like endo) is hormone controlled and not infection or inflammation. Having that big spike in pain and worsening for the first few weeks after your first injection, then ease of symptos is the expected response of someone with endo and thus fits the diagnostic cluster pretty.
Symptoms coming and going is also a cardinal sign of endometriosis as the disease is cyclic and will worsen and ease with your hormone cycles - though its worth noticing endometrosis does co-exist with poly cycstic ovarian syndrome in many woman making their periods eratic. Some endometriosis can be so severe that the endometrial tissue can produce its own estrogen and totally hijack your natural cycle and do all kinds of crazy weird things with it.
To be honest, a diagnostic lap is the only way to diagnose endo, and given your response to the GnRH agonist is now very suggestive of endo, it may prove very worthwhile.
Thank you so much for taking the time to write all this, I really needed someone with a level head to tell me all this. You’re right, the fact that my body has reacted to the injection is a good sign of endo.
And do you think I’m right in thinking that if it was an infection, I wouldn’t have say 3 days of pain then 2 days of no pain, then 4 days of pain etc.? An infection would start and then get worse if not treated right? It wouldn’t keep disappearing then coming back a few days later?
Sorry and thank you, I’m freaking out about the lap next week and what they might find.
PID is either infectious, or inflammatory by definition. If it was infectious we can test for that, the tests are negative so its not infectious. The lack of response to anti-inflammatory medications, and the lack of detected inflammation in the blood is pretty good indicator that it isn’t inflammatory in origin either. So there’s a very very slim chance it is PID. There are a few things it could be, endo being the prime suspect, there’s also another related condition called adenomyosis. It used to be called endometriosis of the womb, until it became classified as a separate disease, because we scientists like to confuse everyone but it closely related to endometriosis. The bloating, the lower back pain, and the pelvic pain as symptoms alone (minus the GI symptoms, the passing blood in stools and urine, that is sometimes associated with endometriosis) is often considered more characteristic of adenomyosis than endo…but the treatment for both conditions is effectively the same.
I know sometimes we want it to be something like that, because it’s simpler than endometriosis. Getting a diagnosis for some of us is such a huge relief and a positive thing, for others, it’s a very scary thing. The only way you will know for sure is a diagnostic lap.
If it is endometriosis, we are here, there is plenty of support online to help through a scary situation. The truth is, while the thought of endo is frightening as treatments are supportive not curative, there is some light at the end of the tunnel. I can say while I’m not pain free, being on the right treatments have improved my quality of life hugely. I’m back running and doing karate and doing things I never thought I would do again. The prospect of diagnosis is scary, but often worthwhile as it means we can use the medical tools we have available more efficiently.
Thank you again, that’s reassuring. I guess my worries are that my bloods were taking when I was taking antibiotics and swabs were sometimes taken when I was having a pain free day so I keep thinking what if it was missed because of this. One doctor said to me that PID can be caused by thousands of unspecified bacterias so I’m worrying that I have a bacteria that wasn’t picked up.
Would the high cervical swabs done by the gyno at the hospital have definitely picked up if a bacteria was causing it?
I’m so sorry to keep asking questions but you’re really helping me understand everything!
I’m not afraid of a diagnosis of endo, in fact I think it would be just a relief at this point. I wouldn’t be able to cope if it was PID though because of the stigma it brings coming from and STD. 😢
Ask all the questions you need. I hate feeling like a bit of a know it all on here, but I did my undergrad in medicine, and my PhD in infectious inflammation, so I’m in this weird position where I have endo, but I also have access to all the research and spent years learning scientists and medics insane wee secret language. So if anything I just…attempt to decode them for people and make scientific information more accessible. We should all have the ability and change to learn everything about whats going on with ourselves.
The number of bacteria doesn’t mean worse pain with any infection, the two correlate pretty terribly, the pain is more linked with the bodies immune response. If you had an infection (even if you were on antibiotics for them), your blood work would show this. We can also tell if someone is recovering from and infection by the white blood cell counts, these patients are normally eosino and neutropenic, and have fewer eosinophils and neutrophils in their blood as the infection will result in many of these cells racing off and dying at the site of infection, and then the bone marrow taking a while to catch up and replace them. When bloods come back normal we can really discount PID as a cause, there are thousands of bacteria it could be, which is why sometimes bloods are often a better indicator, it’s like we’re looking at the smoke rather than the flames, where there’s smoke there’s fire. There’s no smoke here, so PID really should be one of the last things we would expect now.
Oh wow I find that really cool that you did your PHD in infectious inflammation, please be a ‘know it all’ all you want because you’re really helping me get my head round it all right now, I’m so grateful!
That’s really interesting that it would show up in blood work, I always assumed the swabs were more conclusive but I was wrong.
Just to double check, I was in pain from say the 23rd May - to approx 7th June. I was on antibiotics from 28th May - 18th June. My blood test I think was on the 25th June.
Based on these dates because I hadn’t experienced really any pain after 7th June, would an infection sill have showed up in my bloods on the 25th? Or would the timescale have been too wide?
Its hard to give definitive answers because everything we do is in “ranges” since there is a lot of variation from person to person, but two weeks or so is still enough for it show up. It’s not unusual at all to pick up changes in white counts a month after if it’s a really nasty infection. We tend to use swabs not so much as a diagnostic tool, but to figure out which antibiotics to give people as if we pick the right one the first-time round, it works better. Infectious pain also doesn’t come and go so much, if it was reoccurring bacterial infections, then it would be antibiotic resistant, and these infections are normally classically come with infection symptoms. So fever, the shivers, feeling ill, these kind of reoccurring infections often end up with women presenting at the emergency department with flu like symptoms. What you’re describing just doesn’t really (to me) fit a PID diagnosis at this stage.
Given the cyclic nature of the pain, its far more likely to be hormone related than inflammatory or infectious. Depending on where the endo is, some women get more pain before their period, on it, or even in the middle during ovulation. I kept a symptom book for a year while going through the insane process of trying to get seen on the NHS and managed to clock my pain as being the worst from about 3 days before my period, to 4 days after. Then I’d have a decent week and we’d start all over again. This is really the cardinal symptom of endometriosis.
Again super helpful thank you!! A symptom book is a good idea, for me though I’ve developed the endo while taking the contraceptive pill when I used to run like 2 months of pills together which means I don’t have much clue of my actual cycle. I went straight on the GNRH injections after stopping the pill so still not much idea.
Last question I promise. You said PID can either be infectious or inflammatory. Because all (3 times) my STD and swabs are clear does that mean if (on the tiny off chance) it is PID, it is inflammatory not infectious? Aka. not caused by an STD?
I’m currently just feeling so much shame that this could’ve been caused by something I’ve done and it’s giving me huge anxiety. Even though I’ve been with the same partner for 4 years! 😓
Firstly, you did not cause this. At all. It is not your fault. Inflammatory PID is a catch all for when we don’t know what is causing the inflammation – this is normally viral infection. So technically it is also infectious but its to distinguish between inflammation of cause unknown, and inflammation from infection. Most cases of PID are not caused by STDs, the most common causes are just run of the mill infections people pick up, I find the stigmatisation around PID just very unfounded. The chance of you having a STD triggered PID is near nill from what you have told me. Plus GnRH injections are really quite side effect heavy, both in the short and long term, so are used when all other lines of hormonal treatment have been exhausted. The fact you were even given them is a sign that your doctor is very much convinced this is endometriosis.
There are a few theories on how endo develops, but the current best explanation we have for it, is that it is caused by mis-differentiation of stem cells while you are a foetus. So cells that should have belonged to your endometrial tissue inside the womb, accidently get put other places. Because endometrial tissue response to estrogen, you have no idea about this until you hit puberty, when your endometrial tissue kicks into gear and you start having periods. Pain worsens over the years if left untreated because the blood from the endometriosis tissue irritates the tissue around them. Endometriosis are fascinating (from a science pov) and clever little bawbags, they will grow their own blood supply, nerve endings, and distort the tissue they are in, sustaining their growth and causing pain. Endometriosis is something we were born with, we can’t catch it.
You have done nothing wrong, you did nothing to cause this, I promise you that.
I have this gripe sometimes with the relentless positivity I see people push, this is a crap situation, it’s painful and horrible sometimes, and I think it’s important to acknowledge that. More important, is to drive home the message not everything happens for a reason, that idea implies we did something and this is punishment, or we are sick to teach us something, those ideas are poison. It’s a quirk of developmental biology, shockingly, we’re not perfect machines, and frequently biology goes awry. That is not your fault.
I think it stems from the beginning when my pain started, my swabs came back normal so I asked my doc what could be cause? She was extremely patronising, told me that maybe they just ‘swabbed the wrong part’ and maybe I did have chlamydia and that I should ‘start a fresh on my sexual health’.
My gyno who told me to stop thinking it’s PID was also quite dismissive to me he asked me ‘Do you know how PID is caught?’ I said ‘from STDs’ and he said that’s right so it can’t be PID.
So it’s really interesting that you say PID usually isn’t caused by STDs! I feel like I’ve been judged and stigmatised for 6 months already
And thank you for explaining the endo theories to me! Online the language used is much too confusing.
I must say though I started my periods at 13 and they were always normal I never had any problems. I’m now 25 and been on the contraceptive pill for 4/5 years. I’m not sure if you know the answer to this but is it normal to only be experiencing symptoms now? Over 10 years after I started my periods?
Sadly, welcome to womens health care, where it is full of misconceptions, crappy doctors and dismissal of womens pain and symptoms. There is now a large body of research demonstrating extreme bias in womans health care, where woman are basically treated as men with a womb and that’s not the case at all. Also research is heavily male dominated, there was one shocking ovarian cancer research trial…that had only men on it. *Flings hands in the air and screams.*
This ends up dripping down to patients, where women feel like they have suddenly developed endometriosis, and they haven’t. I was in the same position (I’m 29 now). I thought I had suddenly got ill about 5 years ago and I hadn’t, the heavy periods I’d had my whole teenage years were also a symptom. The fact I’d chug ibuprofen to get through a period. That I needed to have baths at night to help with the discomfort, were all symptoms. What happens is the majority of women who have endo never get a diagnosis, and never get help, because the fact periods are painful and its “part of being a women” is so normalised in society they never ever get the help or treatment they should. A small percentage of women have the disease progress to the point it then interferes with life so much they seek help.
When I looked back, it wasn’t that I just started experiencing symptoms, it was more that the symptoms I had were so normalised and ignored.
Ovarian cancer trial with only men?! How are they even allowed to go ahead with that that’s insane. There’s this other recent study into endo I read called “Attractiveness of women with rectovaginal endometriosis: a case-control study”. Give it a read if you need a good eye-roll.
You’re right though, no wonder the average diagnosis time for endo is so long, barely anyone takes women’s pain seriously. I ended up going to one walk in centre at the beginning and the doctor just said ‘if you think negatively then bad things will happen to you’ and sent me away. Great thanks I’m cured!!!!
I’m glad that you were finally taken seriously, there definitely needs to be more awareness that painful periods or any pelvic pain for that matter isn’t just something we should to put up with. We shouldn’t have to fight for examinations and testing either.
I’m trying to think back to my school days but I honestly never had a period that was super painful or heavy, that’s what is confusing me. My pain is not sharp or debilitating either like most, it’s just a constant dull ache. I know there are other ladies out there though that didn’t develop symptoms until their 20’s so I
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