Pelvic Inflammatory diease

[allyshia89]

So I had my laproscopy today and was given a diagnostic of PID. It wasn't what we initially thought and the consultant said there was no endometriosis. My bowel and left ovary is also fused to my pelvis. I was a bit doped up when the consultant spoke to me after so still not 100% sure what it all means. I have to take antibitoics for 2 weeks and then she's sending me a telephone consultation appointment to discuss the results. I've obviously done some research on PID & a bit shocked to what the causes are, worring the main one being untreated STIs. Me & my husband have both been tested previously for anything like this and we're both clear and been together 9 years so i'm a bit miffed to how long this untreated infection has been there and what the cause is. It doesn't make much sense to me as my pain is only when I'm on my period and since I started menstruation at the age of 15. I'm even more confused now! Thoughts ladies? xx

[Tboag]

That's good that you have some answers, but, I think your partner should be treated also, and you are not to have sex during this time,

If you are still suffering after this I would suggest you find out if pid is likely to fuse organs together, as I don't know that answer, but this is a symtom to endo,

Are you under genral gyne, or are you being seen at a BSGE centre, unfortunately lots of genral gyne doc are missing endometriosis at 1st laporscopy.

good luck with your antibiotics just think you could be back to your old self very soon, how exciting for you,

Xx

[allyshia89 in reply to Tboag]

Thank you for your reply. She was just a normal gynae & obs. consultany and there was also a junior doctor with her. I work at a GP surgery so I might just call up to see what my doctor recommends about my husband. The consultant never mentioned treating him as well. I'm super paranoid now as she couldn't give me a definite answer to what caused it and you think the worse when they say untreated infection but she said it could also be previous thrush or bacterial vangial infections that's crept up through the cervix. I was still pretty drowsy when she was explaining so I'll anticipate her call. I do also think they made a mistake on my discharge summary. They've put the right ovary and I'm more than certain she said the left as that is also the same side I get all my pain. Maybe it's worth calling the gynae team today to see if it's correct as I don't want false medical information going to my doctors. I feel like I have answers but at the same time I'm still confused x

[allyshia89]

I've just read my discharge summary again with a clearer head and I also have a retrovered uterus to add to my list of problems Xx

[Tboag in reply to allyshia89]

I had that to, and that too is a symtom of endo, I would wait and see if your symptoms clear, hopefully they will, but if they don't I would strongly advise a specialist refferal

[blondie120]

Hi I was on hol in Cornwall when I got very ill was rushed by ambulance to hosp they operated straight away by keyhole removed my appendix cleaned out huge amount of green pus an foind big tubo ovary cyst which they left much to the annoyance of the gynae team they should have called in to assist when I came round they told me I was lucky to be alive an that I have pid stating my boyfriend of 2 years must have given me a std they gave me 3 strong types of anti biotics sent me back to London where 1 week later I was taken ill again rushed into to hosp an diagnosed many weeks later as having endo 5 years on 4 surgeries later all I have left is a vagina ! But I'm endo free I never had a std get another opinion, they made me feel bad an caused upset for my fella an me an they were wrong! Take care x

[allyshia89 in reply to blondie120]

Thank you for your reply =) I've never been ill with it apart from one time I had chronic pain when I was on my period I ended up going to A & E but they just sent me away with a prescription for pain killers and advised to have an ultrasound which I did and it showed cysts on my ovaries (more so on the left) I know I don't have PCOS as my bloods are fine. I'm in such a muddle now with it all. I don't understand if I've been living with an "infection" for so long why has it never shown on swabs or blood tests and why haven't I felt poorly. Even if i have the antibiotics how will they even know if they've worked? The only time I really suffer or feel unwell is when I'm on my period. I must admit endometriosis & PID symptoms are very similar x

[allyshia89]

She didn't do anything. It was only a diagnostic. I won't have any detailed results until she's booked me into her telephone consultation clinic which I think could be up to 4 weeks. I'm generally fine when I'm not on my period. This only occurs at my time of month. So ever since I started at the age of 15 I've always suffered from painful heavy periods which effect my every day life, I had sickness from school at the time and struggle to work when I'm on. I also suffer with my bowels when I'm on, I get a shooting pain and the only way to relieve it is passing stools. I experience painful sex when it's deep penetrative and certain positions. Not being able to get pregnant after 2 years of trying. Irregular periods when not on the pill. Fatigue and lack of energy. Occassionally lower back pain between periods. I had an ultrasound and it showed cysts. More so on the left where I always suffer from pain. My bloods are fine so I was told it wasn't PCOS. Although I do get high prolactin every now and then. My last bloods I had done November show I wasn't ovulating. Then after yesterday I learnt I have a retroverted uterus, left ovary and bowel are fussed to my pelvic wall

[Scooteeder]

Hi,

Just noted your post... I'd be a bit confused, too, if I were in your position! Many of the replies, below, seem to make a lot of sense and there is some good advice in there.

Here's what I can add, for what it's worth...

I see that you have been treated by a basic Gynae, not an Endo specialist. Many basic Gynae doctors do not know much about Endo, and they can get things wrong. I was diagnosed with Endo in 2011 after more than 9 years of fighting with my Gynae because he misdiagnosed me with Polycystic Ovaries following just ONE ultrasound scan. Not even a diagnostic Lap, or MRI scan!

I've not heard of PID fusing organs together, that is a much more common symptom of Endo and Adhesions. Pain that is focussed mostly around your period is, again, not usually associated with PID but can be symptomatic of Endo.

No offence, but I think your Gynae has left you in a mess, my dear! If I were you, I would be asking that I be referred for a second opinion from an Endo specialist. You can look up a list of specialists online at:

bsge.org.uk/ec-BSGE-accredited-centres.php

When you attend future appointments, I would also advise you to take with you a list of the important questions that you need your doctor to answer. That way, you are organized and less likely to forget what you want to say. I would also recommend keeping a symptoms diary, in which you record symptoms - where they are, when they occur, how they make you feel... This can help you spot patterns that may pinpoint specific disease activity. Again, it can be helpful for doctors too, as it gives them a clear picture of your illness and symptoms in a really concise form. Take the diary to appointments, too.

I would suggest that the most appropriate way to find out what is going on would be to request an MRI scan from a specialist. Endo CAN show up on MRI scans, and they are far less invasive than another lap. I would be concerned as to what has fused your bowel and left ovary to your pelvis. Endo CAN do this itself. However, Adhesions (stringy, fibrous growths caused by scarring and inflammation) CAN do this too. Whatever the cause, you probably do not wish for your pelvis to remain this way, as it will likely lead to continued pain.

Please consider going to your GP to discuss your concerns, and to ask for referral to a specialist. This is affecting YOUR body and YOU have to live with it, so it's only fair that you should have the opportunity to find out what's wrong and to receive the appropriate treatment to deal with it.

Wishing you all the best,

E. x

[allyshia89 in reply to Scooteeder]

I work at a GP surgery so I'll speak to her when I go back to work next week. I'll let the consultant explain what she found and then go from there. I'm not an expert but I'm really not convinced that is what is wrong with me. I may have that as well as endometriosis but like you said it's probably best to see a specialist. Surely they aren't just going to leave me with my bowel and ovary fussed to my pelvic wall? Xx

[Scooteeder in reply to allyshia89]

Sounds like a sensible plan to me. If there is a GP that you work with who you trust and get on well, then it maybe is a good idea to arm yourself with as much information as possible. I think it makes sense to see what the gynae consultant says; at least then you will have a clear picture of what they think (as opposed to them telling you when you are still groggy from anaesthetic). Once you know what they are suggesting, you can discuss this with the GP.

I would still request referral to a specialist, because the issues concerning your bowel and ovary are not likely to miraculously go away of their own accord (I reckon all us Endo ladies wish THAT might happen, but it doesn't!). If they remain stuck to your pelvic wall, then it's highly likely that pain and inflammation will persist, with the result that you will continue to experience considerable discomfort. Also, you do not wish to risk permanent damage to your ovary or bowel.

Endo specialists are usually much more clued up regarding treatments and advanced surgical techniques. Also, they work in multidisciplinary teams, so they can call on assistance from bowel specialists, urodynamics, physiotherapists, and suchlike... to give you a much more comprehensive picture of what is going on, and to offer much more comprehensive treatment.

Get a clear picture, discuss with your GP, and take it from there. I hope that everything works out the way you want.

Best wishes,

E. x

[allyshia89]

It's my right ovary not my left. I was so sure she told me my left as that's where I get my pain the most but queried it today with the consultants secretary and it'd definitely the right x

[allyshia89]

This was my first ever surgery. This is why I'm so confused. I've been with mt husband for 9 years and we've both had swabs in the past and never had a STI. I've suffered with thrush before but never ignored it and always had it treated. Never had any offensive discharge to make me suspect I have an infection down below and I'm very self conscious when it comes to female personal hygeine. I forgot to say I had a dye test done as well and my tubes were fine she said the dye 'flowed beautifully' So I don't have any blockages. I'd only just came out of theatre when she came to speak to me so I didn't really understand what she was saying to me as I was still really sleepy. I do have a discharge summary though which confirms what I've told you if you'd like to see it? X

[allyshia89]

I'm in Rutland. I've sent you a private message ref. My discharge summary. Thank you for all you advise and comments x