Endo or PID?: I have been so poorly now for... - Endometriosis UK

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Endo or PID?

derbalbert profile image
19 Replies

I have been so poorly now for nearly three weeks. Last week I was bounced all over the NHS before being sent to A&E to then spend 8.5 hrs on a surgical assessment ward in a room with no beds, in tempeatures of 33 degrees with no food, water or pain killers truly awful. After a pelvic exam, which was just horrendous in the way the doctor conducted it and with respect to my privacy (two interuptions one nurse who actually came round the curtain whilst I was on the couch) the consultant has diagnosed me with Pelvic Inflammatory Disease PID. I was started in a 14 day course of antibiotics (2 sets) which have caused me the most horrific stomach upset. I am posting in hear as I think with my history and symptoms that PID may not be the issue and it may be Endo and wonder what people would advise.

current symptoms:

Right sided abdominal pain

Bloating

Investigations:

Ultrasound internal and external inconclusive fluid visible round right ovary

swabs done awiaiting results

Bloods done - no issues reported to me

History:

recent symptoms - steaking of blood in discharge upto 1 week piror to period

heavier periods

abdominal bloating and pain

weight gain

2011 Blood filled endometrioma removed by laparotomy, with left ovary and tube right ovary left in situ.

Any insight or support appreciated

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derbalbert profile image
derbalbert
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19 Replies
LRog profile image
LRog

I am so sorry to hear about your upset tummy on the antibiotics and all that pain. It's definetly a rough time. Hang in there if you can. Your symptoms sound alot like adenomyosis with endo, and possibly a cyst on the ovary. Has this been ruled out? Pain from ovarian cysts can be mind numbing. I think the most important thing would be finding a great specialist. I did research after my first lap and getting the right one can make a huge difference to getting some relief and better understanding of what's actually going on. I can't stress how important that is!

derbalbert profile image
derbalbert in reply toLRog

Thank you I have no idea what Adenomyosis is I will have a look online. I have private medical insurance and I am hoping gp will agree to refer me today any clue where I can find out who is good and who is not consultant wise? Thanks again

Patricia2015 profile image
Patricia2015 in reply toderbalbert

So sorry you are in so much pain!!

Adenomyosis is endometriosis interna, in the uterine wall.

derbalbert profile image
derbalbert in reply toPatricia2015

Thank you

Nickimidge profile image
Nickimidge

Wow! Your symptoms are exactly like mine! 3 months ago my journey started very similar to yours with a visit to my local a&e in excruiating pains, finally admitted onto a ward, examinations, swabs, bloods etc, and internal scans, finally after 2 days of no food or water i was told i had hydrosalpinx (blocked tube) due to PID and sent home with antibiotics, my GP now suspects i also have endo, but my gynae says i have ibs! 🙈.

I found with my tablets if i didnt have them before or after food i had an upset tummy, i don't know if that helps at all xx

derbalbert profile image
derbalbert

sorry you have had a similar journey to mine and thanks for sharing with me. I will try to take food on with the tablets - not sure how long it will stay though. I think I will need to explore with GP about my diagnosis and if it is correct. Thanks

Nickimidge profile image
Nickimidge in reply toderbalbert

Your welcome. It was my GP who told me to take them before or after food! What antibiotics are you on? If you don't mind ne asking? X

derbalbert profile image
derbalbert in reply toNickimidge

doxycycline and metronidazole

Nickimidge profile image
Nickimidge in reply toderbalbert

1 of the ones i had was metronidazole, so maybe try taking that before or after eating! X

derbalbert profile image
derbalbert in reply toNickimidge

Thanks x

Lulububs profile image
Lulububs in reply toNickimidge

I take acidiphilus the highest count from holland and barratt and keep them in fridge or the bacteria dies and when on or after antibiotics i take three a day

Lulububs profile image
Lulububs in reply toderbalbert

Always make sure when on antibiotics u take really good probiotics

Lulububs profile image
Lulububs

This happened to me ten weeks ago ended up in a&e in pain left side lower pelvic pain . Was put on co amoxiclav antibiotics and got worse, i was allergic to the antibiotics and ended up with liver failure.

That got better but was still left with real bad stomach problems which never had before! Saw my gp was put on strong probiotics as u need to build ur good bacteria in stomach up or u have digestive problems.

All the symtoms sound like endo to me but so many diseases are very similar. It a case of illuminating

derbalbert profile image
derbalbert

Thank you will do Yakult in the fridge

Heloo85 profile image
Heloo85

My endo caused my PID. An endometrioma ruptured.

ThaliaThalia profile image
ThaliaThalia

You've been through such a tough time. What a horrible hospital experience.

The fluid could be caused by a cyst rupture. I was told by the doctor, when I presented at A&E in agony, that my symptoms couldn't possibly be endometriosis or a rupturing cyst. Like you, I was sent home with antibiotics and a 'diagnosis' of PID. The ovarian cyst ruptured in a few days and I was back in A&E. The expert consultant assigned to my case ruled out PID immediately and I was referred to his clinic for a laparoscopy which confirmed endometriosis and another cyst. Incidentally, all my swabs came back negative. There was no PID, unless it's an acronym for the Patronising Ignorant Doctor on duty.

If you suspect you have endometriosis, trust your instinct. It could be that a cyst has ruptured, too.

I send you so much luck and love for the journey ahead. It does get better. x

derbalbert profile image
derbalbert in reply toThaliaThalia

Thank You - If I am honest the examination of last week is haunting me it was horrid and made me feel terrible. I cried after.

I have 6 days antibiotics left and still have right sided discomfort I am seeing my GP tomorrow and am going to request a referral to see a specialist under my health insurance. I will discuss with him the examination and lack of care at hospital too.

ThaliaThalia profile image
ThaliaThalia in reply toderbalbert

That sounds awful. I'm sorry to hear you've suffered. Please let us know how you get on. We're here if you need us. x

Heloo85 profile image
Heloo85

Sorry my reply was quick as had drs appointment. I had a very similar experience to you! Drs kept testing for STIs which came back clear. Ultrasound findings where exactly like yours. I was sent to GUM Clinic as Dr thought PID. A slide showed bacterial infection but STIs again come back clear. I had 6 months of double antibiotics. Had lap and diagnosis was then changed to Stage 4 DIE.

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