Gynae suggested Lap, worried it isnt endo, and will waste their time. Would really appreciate advice.

[LaurPharm]

Hey All, I'm so sorry this is long...

On Friday I had my first appointment with the Gynaecologist.

To give a quick background into my symptoms this is how it has been...

Years of pelvic problems, investigated for bowel issues with sigmoidoscopy and CT colonography as I had a bout of rectal bleeding. Finally given the diagnosis of IBS. Had lots of issues with bowels over the years, used to be more on constipated side but in recent years much more loose, I get exceptionally bizarre bowel movements during my period, I haven't noticed blood of late but definitely diarrhoea, cramps, pain around period. I have also been Diagnosed with vulvodynia psychosexual pain??? I was very doubtful of this... I wasn't psychologically scared of sex... it was just painful! I never booked the psychosexual counselling offered.

I came off the progesterone only pill about 2 years ago after being on some form of contraception since I can remember due to very bad acne. Periods during the pill were fairly non-existent, I never really used to have a problem.

This time last year I noticed I started to get this dark brown/black tarry discharge in the run up to my period. I never remember having this in the past.

Month on month more symptoms have appeared over the last 12 months as follows:

Monthly premenstrual spotting/discharge - can be quite dark brown or sometimes more red, range 6 days usually but has been up to 11 days before period.

Increasing pelvic pain and period cramps, has had me up in the night having to walk around/swaying/rocking to try ease the pain. Hot bean bag in microwave to help.

Back pain.

Flank pain on my right hand side - kidney area.

Pain/twinges with orgasm, pain with sex, especially in deeper positions (sorry if TMI).

Pain around ovulation time. And at other times in month.

More recent months, bleeding in between my cycles - 2 cycles ago I had fresh red blood on day 9 of cycle?

Last weekend I had a small amount of blood after sex.

Low grade fevers every few weeks. (37.6-38.0)

Ive passed more clots during my period lately and have had to start using a cup or period pants/reusable pads as quite heavy. My heaving period bleeding only lasts 2 or so days though?

At my gyane appt on friday... Im a bit mad at myself because I was a bit of a wuss, and had tears when he was examining me, from pain and worry really.

All my bloods are NORMAL, my ultrasound scan was NORMAL, he didn't mention 'feeling anything' as such on examination but did say it shouldn't be that painful. Smear 2 years ago was ok.

So my question to all who have been diagnosed laparoscopically... does this sound like endo, and does it justify a lap?

My consultant has suggested we go for lap in next few months... but i'm worried, not so much of the actual op (that too as never even had a GA before) but more that I'll wake up, be told all was fine, as i've heard that so so many times over the years with IBS etc, I'll feel awful for wasting their time and feel like an utter drama queen who cant handle period pain!

Thank you all so much, I hope you're all doing well!

Best wishes!

[happyseal]

You can always ask for an MRI instead. It may not be able to see everything but MRI is one of the options to diagnose endometriosis. Also, blood CA markers 199 and 125 are usually done to see if there is endometriosis.

[LaurPharm in reply to happyseal]

Ah really! That’s very interesting to know thank you!! I wondered if that would be the case. My Ultrasound was normal! My consultant didn’t mention any more imagine just straight to lap. But maybe I should ask?

[NR95]

Hi. It is difficult to say if it is endo as with any endo case, but having said that, I have endo and have all the same problems that you described. I had ultrasound scans and none of them showed up any endo. However, I went forward with a laparoscopy and it was on my bowels (I had and still have IBS symptoms), bladder and ovaries. The only way to decisively tell if you have endo is if you have the lap. Please push forward with this. It is worth investigating. Please don't worry about wasting their time. Your body and your health is the priority here x

[LaurPharm in reply to NR95]

Hello NR95,

Yes you are right, it is just so hard to know. I just have this innate doubt after years of being told my bowel problems and pain are mostly 'functional' ie IBS ect. So i'm almost half expecting them to say the same here. But maybe all those years of bowel probs was actually somewhat due to endo? Who knows.

It is also likely with endo to have good days.. where there is no pain?

Thanks for your support, I really appreciate it! x

[NR95 in reply to LaurPharm]

It could just be IBS, but you never know. After the laparoscopy, my IBS-like symptoms improved.

If your gut feeling is that this is more than IBS, then keep chasing until you get an definitive answer.

Yes, it is more than normal to have pain free days with endo.

I know it is hard not to feel like you are wasting their time, but now is the best time than there has ever been to get this investigated for Endo- there has been a big push in awareness and the release of the APPG Endometriosis Report.

Good luck! X

[GoldenGirl2002]

I would not worry at all about wasting peoples time! Even if a laparoscopy was to find nothing, you can rule out endometriosis and know it must be a different issue that you can look into treatment options for. Your symptoms could easily be Endo and getting the surgery now means you can spot symptoms before they progress further and get to a later stage if it is Endo. Surgeons are there to help don’t worry xx

[LaurPharm in reply to GoldenGirl2002]

Thank you GoldenGirl,

The logical side of me thinks, this needs investigating either way as you said. And if it is endo I'd want to know sooner rather than later, I dont know all the implications of letting it get worse, but I would like a family at some point.

I think I just need to accept that it may or may not be endo, but the only way to definitively find out is that lap.

Thank you so much xx

[GoldenGirl2002 in reply to LaurPharm]

I know it’s worrying but it is good to know either way. Dont be disheartened if it isn’t Endo either, it might help in narrowing down causes and stop you from going down treatment routes that won’t help you. Feel free to message me anytime and good luck xx

[Hidden]

All the symptoms you described are what I have been suffering to. I had my lap last week and they didnt find any endo. I started to cry as I felt like I had waisted their time. My consultant was so lovely and reassured me I had not waited their time at all. Although I didnt have endo present they found I had adhesions on my upper and lower bowel, appendix and uterus. My bowel was attached at my uterus too.

[LaurPharm in reply to Hidden]

Thank you for your reply. I can imagine the lack of answers is so frustrating! Did you get an explanation as to why you had adhesions if no endo? Have you ever had abdominal surgery?x

[LaurPharm]

Thank you all for your replies, I really appreciate your advice!

So, no date for Lap yet.

Typically this month things have changed again re my cycles, since last october I had been getting between 6-11 days of brown spotting before full menses. This month... not very much, perhaps slight brown d/c yesterday and more proper blood today, accompanied by period pains.

Is this my body telling me 'you're fine'. Or can endo not always have ALL the symptoms EVERY month.

Thank you all x

[st07]

Hi LaurPharm ! Did you get your lap in the end? I am in a very similar position to you: ultrasounds and MRIs show nothing, there is nothing apart from me saying I am in pain that can confirm for sure I have endo. I have been offered laparoscopy but have been in doubt because it feels like I am imagining it?