Feeling Frustrated. Doctors now saying PID (pelvic inflammatory disease), anyone else had a similar experience?

[Andys_Girl]

Basically I went to the doctors again yesterday because I started to experience pain in my right hip which was making it hard for me to walk, the doctor I saw asked me to go back today for blood tests and an internal examination, however I had to see a different doctor, who seemed to think my symptoms were PID, but to me this doesn't make sense, after looking at the symptoms online they just don't seem to correlate at much as endo does. I have never had an STI, I have had the same sexual partner for 5 years so no changes there, and I've never had an ectopic pregnancy.. also I don't have the same symptoms, i.e. fever, or vaginal discharge which smells or is a yellow colour.

However when I look online my symptoms do correlate with other endo sufferers...

-Tiredness

-Pain after sex

-spotting after sex

-Lower back ache, worse when on right hand side, painful at night, and when stood for too long

-coldness

-headaches

-stomach cramps

- bowel changes before and during period

-worse symptoms when not taking pill

- wind which feels like I need the toilet but there's nothing there

- Shooting pains down back of my legs

- Rectal pain sometimes

- period like pains when not due on.

etc.

I feel as though the doctor dismissed all my other symptoms and just concentrated on the back ache and pain after sex, he didn't link it with my cycle or ask me about any other symptoms. Luckily I still have my appointment to come with the gynecologist, and hopefully something will come from that, and I have kept a pain diary like some of the other girls suggested on here to take to that appointment.

When I asked the doctor if it could be endo he just said its unlikely as I am too young (20), and it usually occurs in people who have had a cycle for a long time (mine started when I was 11), he also said that the treatment for endo is the pill, and therefore the fact I am experiencing pain whilst taking the pill suggests its not that. During my internal he said he could not feel any cysts etc, and said that my cervix was nice and clean... does this mean anything at all!?

I feel really upset and angry and as though I am just not being listened to... I'm so confused about what to expect next. Hopefully something will show in my results from my bloods etc.

Any one who has experienced this, I would really be greatful to hear how things went for you.

Thanks

Andys_Girl

xxxx

[lillyflower]

Hi, I know how you feel I was told pid too in the begining even though I've been with my husband 9 years, had all tests came back ok, had scan where they saw fluid was told probably pid so again tested but again all clear! I then had gyni appointment who listened to all my symptoms and recommended a lap which then confirmed endo. So I was upset at them assuming it was sti or pid but realised after they were just ruling out the most common issues before putting me through an op when all tests were ok. Try not to take it personally even though its hard not to and see it that they are ruling out all the possibilitys and reading your symptoms I would think the gyni will suggest a lap as they're the specialists and I'm not a doctor but your symptoms are similar to mine. As for age it doesn't mater, hopefully it means if you do have endo they find it quickly and help deal with it while it's not had too long to grow and get worse. Having everything written out to tell gyni is great and I hope you don't have too long to wait for your appointment x

[Ashleeey]

Hi, yes unfortunately PID is a common diagnosis before we get properly diagnosed, i was given the same speel from the docs was sent to a family health clinic many times. Right up until i fought for a lap saying that i would take all responsibility if nothing was found and the docs thinking and writing saying it was not their decision and basically i was making it all up to get attention (and at one stage after non diagnosis was wondering this myself) was i diagnosed with endo. Unfortunately two trips to gynae didn't help and they too weren't much help. So even if you dont get the answer your looking for (albeit a difficult and unfortunately horrible disease at times) keep fighting its your body and you know it best. Good luck and stay strong

[Andys_Girl in reply to Ashleeey]

Thanks

Feeling pretty annoyed, but am willing to keep fighting. The only thing i'm concerned with is that if the doc really thought it was PID shudnt he have given me antibiotics? Don't really want it getting worse if it is that, but hey so far i've been told IBS and PID so looks like i'm becoming another statistic of diagnosis failures! x

[teacosey]

Two conflicting thoughts came to mind when I read your post about PID....

Firstly, when I was waiting to see a doctor someone rather old and wise gave me some advice about how to act: they said never to vent or sound critical. They said the nicer you are as a patient, the more the doc will want to help you.

Feeling frustrated is normal, and you will always have bad days and then good days. But try not to come across at your upcoming Gynae appointment as a frustrated / negative patient because you will risk being given less help than you deserve. Utilize some acting skills! Be as polite as possible, and try to insist on a Lap. That is what I would do.

At my first ever Gynae appointment, the doc said to me and my husband that he did not think I had Endo and that I obviously had some sort of anxiety disorder and possibly an infection. But because we were careful with our words, thanked him for his thoughts and politely (but firmly) asked for a Lap anyway, he did agree. We utilized our acting skills, and were over-the-top polite and friendly.

At the post-op, he immediately apologised for what he had previously said and he was clearly anticipating a bad reaction from us. But we just told him not to worry about it, and thanked him for his apology and he was so cooperative from then on. He spent ages talking to us about the options, showing us diagrams of what he had found (Stage 4 Endo and pelvic adhesions and cysts etc) and he actually talked slowly so we could write things down. All because we were careful not to criticize, and were deliberately over zealous in thanking him for seeing us. In fact he even wrote in one of his letters to my GP that we were really nice patients!

The second thought that came to mind when I read your post was my friend who was diagnosed in Spring with PID. She went to the doctors time and time again because of pain and inability to conceive. Even I thought she must have Endo. But she was diagnosed with PID, took the courses of rather strong anti-biotics, and is now healthy and just found out she is pregnant. She is married and has not had any extra-marital affairs. But somehow, she got PID.

All the best

Tea Cosey x

[Andys_Girl in reply to teacosey]

Thanks Tea Cosey.

I think yesterday I was just upset after being poked and prodded about and having yet another "possible" illness, its frustrating not getting a definate diagnosis (I get the feeling a lot of people go through this), and I felt like he was talking down to me because of my age. He asked me what I thought it was, and if I was worried about it, I said I was concerned and I had read about endo by typing in my symptoms online, he automatically dismissed this and said it couldnt be 1. because of my age and 2. because my scan was clear. He made me feel like I was making the whole thing up. I could of cried. Instead I just sat there smiling and nodding. He suggested PID before even examining me, then never mentioned it again afterwards, obviously he said to wait for the swab and blood results and said a gyne would reassure me that it wasnt endo. I feel slightly worried now that this will make the gyne appointment difficult, but as you say I will keep positive, take my pain diary with me and be greatful of any help they can give me.

Hopefully the pain diary will help get me somewhere. Today is the first day of my period and I can hardly move, I feel totally alone, fed up and emotional! Really just want something to help! The doctor gave me Naproxen, but I can't say its helping much. Trying to think positive lol!

Thank You for all your advice Tea Cosey. I really appreciate it! xxxx

[Andys_Girl in reply to Andys_Girl]

So would you say, if the gyne doesnt come up with an answer, I should request a lap anyway?. xx

[teacosey in reply to Andys_Girl]

You poor wee thing.

What is the next step? Will your GP phone you with the results of that blood/swab tests you had? Or can you phone them??

Will you get the results before your upcoming Gynae appt??

[Andys_Girl in reply to teacosey]

He said I can phone Friday for blood results but swabs will take a while longer, so should have them before gyne appointment. Its been four weeks since I was referred so hopefully il get a letter wv an appointment soon.

Hopefully having the swabs n bloods done will mean the gyne appointment will be a bit easier.

I am 150 miles away from family and my partner is a lorry driver so I just feel rather on my own at the moment. My partner has been great, keeps asking if I'm okay, runs me baths and hot water bottles when I need them, but being 20 I could do with my mum or a female friend to talk to,so its really nice that this page is here.

Thanks for listening TeaCosey xxx

[EndoUK_Comms Moderator Endometriosis UK in reply to Andys_Girl]

Hi Andys_Girl,

We do operate a free helpline support service, where you can talk to trained volunteers who all have direct experience of endometriosis.

Details about the helpline can be found here:

endometriosis-uk.org/suppor...

All the best,

Endo UK

[Impatient]

Yep another one here given a PID diagnosis by an A&E doc when infact I had just experienced a burst ovarian cyst, and had stage 4 endo and two endometriomas causing problems. He didn't scan or swab me for PID, just sent me home with anti-biotics the imbecile.

I know from this forum there are loads of us given a PID diagnosis initially, which is kind of insulting when you know damn well you don't have PID. So if you are certain you couldn't have PID tell the Doc and insist he/she looks for something else as the cause. You know your sexual history far better than they could guess at.

[Andys_Girl in reply to Impatient]

Yeah, there is a part of me that knows it is not PID, my symptoms dont correlate at all, yet do with endo. I was 11 when my periods began and they were very heavy and painful, when I was 15 they put me on the microgyron 30, that made me depressed so they put me on Loestrin, I am still on that now four years later, I still have very painful periods, but not as heavy, infact now its more just thick clots rather than an actual "flow" (sorry for tmi). To me this symptom alone aside from the long list of others, tells me it is not PID.

I feel like I am searching for answers everywhere at the moment. Just want to know what it is so I can be treated properly for it. I believe if the doctor believed it was PID he would have sent me away with antibiotics.

xxx

[Andys_Girl]

Results came back today..everything clear. Guess its just to wait for the gyne appointment now.. xx

[trixie88]

I've just found out that I might have pid but have been suffering for quite a while. I thought it was ibs but have got all the symptoms of pdi but cannot be from an sti. I have really bad pains in my right side of abdomen and have been feeling sick and I've been put on two lots of antibiotics and was told to go back to see the doctor if I am still in pain. I'm hoping it clears but I still feel the same after taking antibiotics for three days. Has anyone else been through this and has any advice thanks

[Hidden in reply to trixie88]

Hi Trixie,

Did the antibiotics work for you in the end? I've had pid for over three weeks now (it's not the first time I've had it) but the antibiotics haven't helped much. I'm still getting bloody discharge, pain in my stomach, hips, back, pelvic region and vagina! Also, I'm so bloated all the time.. The doctors think it may be ibs. Just wondering how it all went for you? x