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Does this sound like PID or perhaps Endometriosis?

(11 Posts)
Pannacotta Thu 06-Feb-14 14:50:29

I had to see my GP the other week for heavy bleeding (lots of small clots) only a week after my previous (heavy) period finished. She gave me Norethisterone to stop the bleeding and arranged blood tests. These flagged up general inflammation.

I have had problems the past year with bleeding after sex (am separated so not happening now) as well as painful periods and had a scan last summer which didn't show up any issues.
Had a smear this week and it caused a lot of bleeding and pain (lower abdomen and back) so back to GP who took swabs and examined me and thought I seemed very tender around my ovaries/F tubes.
She mentioned PID (I had negative swabs last summer when the scan was booked).

I am really uncomfortable at the moment with nagging pain day and night and look generally quite unwell.
Have been referred for another scan and to see a Gynae but would like to be well prepared as am not very assertive with doctors.

Any thoughts what might have caused this?

AttilaTheMeerkat Thu 06-Feb-14 15:29:14

Endometriosis can cause such symptoms to arise so it is possible that you have endometriosis. Its also very common and much underdiagnosed. Its usually diagnosed through a keyhole surgery op called a laparoscopy; things like ultrasound scan and blood tests do not detect it.

Am glad that you have been referred to see a gynae.

In the meantime I would keep a daily pain (number that on a scale of 1-10) and symptom diary as this will be helpful to the gynae also.

Pannacotta Thu 06-Feb-14 15:39:49

Thanks Attila I will do that.
Am hoping I see a good gynae, there are a bit mixed in our local hospital.
Are they likely to do a laparoscopy if the scan shows nothing?

AttilaTheMeerkat Thu 06-Feb-14 16:15:58

They may well do a lap operation ultimately.

Hopefully you will see a decent gynae; do not be afraid to ask this person lots of questions about his experience in dealing with endometriosis cases.

Was diagnosed with endo myself so if this is what you do have, do feel free to ask questions.

Lauren83 Thu 06-Feb-14 19:47:06

Hello

What the only way to truly diagnose endo is a lap, they can also see on a scan if you have endometriomas and/or hydrosalpinx, both tend to come hand in hand with endo, I have stage 4 and first we knew was from an internal ultrasound

Hope you get sorted

Lauren xx

Pannacotta Thu 06-Feb-14 20:41:26

Thanks for replying.
Is all a bit worrying really.
I gather that you cant treat endo very well from what I have read.
The GP did mention the Mirena coil and while I am not keen on hormones I cant keep going like this. Do either of you have experience of the Mirena?

Lauren83 Thu 06-Feb-14 20:54:27

I haven't, I had a lap, 3 months on Prostap (chemical menopause) then another lap, I'm so much better than what I was, I was in such a meds just hadn't had that many symptoms until 18 months ago really, my second lap was 6 hours it was a pretty big job! Xx

Pannacotta Thu 06-Feb-14 21:17:44

Oh poor you Lauren.
Take it easy and rest up. Hope things improve for you.

ContentedSidewinder Fri 07-Feb-14 10:37:54

I was diagnosed with endo in 2000, as the GP had suggested it I had a google at the time and like Attila recommends I wrote a detailed history to take with me to the consultant.

This included when I started my periods, what they were like, I kept a diary of pain and where the pain was (lower back, ovary, generally in the abdomen) and I could see a pattern emerging. I had been fobbed off for years by male doctors who just told me I had painful periods and get on with it.

Consultant did internal exam which was painful if I am honest, due to the feeling around involved, he had fingers inside me and was pushing on my abdomen to feel around. I had cysts on my ovary and womb and so was sent for a scan.

Started meds, pure progesterone to begin with then full on fake menopause for 6 months including HRT. Was not enjoyable but was prepared to do anything to help with the pain. I had acupuncture, drank disgusting Chinese tea, overhauled my diet etc. My endo was very aggressive.

Finally got a laser lap and dye (where they put dye through your fallopian tubes to see if they are blocked) Was told at that point children would be a struggle to conceive without IVF, they didn't even know if one of my ovaries was working because it was so scarred with endo deposits as were my ligaments on that side of my body.

But I did conceive naturally and in a very short space of time, and had another baby 3 year later. Despite all the medication at the start, I am pretty much pain free, apart from ovulation and 2 days of my period, I am well, but I do suffer from fatigue, but that is preferable to pain.

I never would have thought that 14 years ago, when I was crawling on the floor writhing in pain and feeling like I would pass out that I would be pain free at some point. So although endo can be hard to control, it can be dampened. And knowledge is everything, the second I come on my period, I know that pain is coming, so pain killers back to back and a period TENs machine get me through.

I haven't had the minerva coil but my friend has it for her endo and gets along well with it.

Pannacotta Sun 09-Feb-14 17:19:22

Thanks Contended that is really helpful and sorry to read about your troubles.
It is hard to know what is causing my bleeding and pain but have started to keep a diary. My GP did an internal exam the other day and it was very tender, esp on my right side so perhaps there is a cyst.
Am finding I have a nagging pain in my lower back esp, a bit like being in labour as your cervix starts to dilate, which is really weird!
Hopefully the scan and seeing the gynae will make things clearer.
Luckily I have DCs so at least I don't need to worry on that score and wouldn't be too upset if I am infertile now just be nice to know what the problem is!

ContentedSidewinder Sat 15-Feb-14 09:01:07

It was hard for me because I had weird pain and believed it was unrelated but I have thigh pain, but not like a pulled muscle but where the thigh feels numb on the top surface of the front of my legs and then I had ankle pain. This is apparently because some of my endo deposits are on nerves that run through my abdomen and into my legs!

I get back ache like I am in labour, (am actually on my period now so it is easy for me to pinpoint it all) and my hips are hurting, again like I am in labour, they ache.

I nuked my body with every bit of drug they would give me because quite frankly, it was no life anyone would choose. I know you are concerned about hormones from the Mirena coil but honestly, if someone could take all this away from you would you not try it? The only thing I drew the line at was testosterone shock because the risk was facial hair and deepening of the voice which could have been permanent.

Oh and weirdly, I found using a menstrual cup helped the period pain a bit.

Hopefully you will get the test results back soon and see a gynae.

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