Negative laparoscopy for endo

[HannahBee1]

Dear all,

Just wondering whether anybody could offer any advice.

I have just had my first laparoscopy which came back negative, apparently everything looked normal. I was given a laparoscopy after suffering from the following:

-Constant vaginal bleeding that stops for only a few days each month and then starts again, very heavy where I have to get up in the night to change tampons by setting my alarm

-general pelvic pain around my ovaries, low in my abdomen and around my back

-pain and heavy bleeding on intercourse, when it's actually possible!

-pain on urination and constant urge which gradually turned into incontinence although I am 27 and never had a baby. Medication has helped as before I would be up until the small hours rushing to the loo every 5 minutes to avoid pain and leaking

I had assumed it was all linked to my severe PCOS until the urine leaking started. Got to the point where I couldn't go to work because I couldn't sleep and then was so afraid of wetting myself and in severe pain.

Obviously I am pleased that it is not endo and feel lucky in this regard. But I am also struggling emotionally as my symptoms are humiliating and painful and i am no closer to diagnosis. My surgeon spoke to me afterwards when I was off my face on morphine so I have no real idea what's next. He rang me a little later. He mentioned something about having my bowels checked and something about there maybe being something inside the wall of bladder or uterus or something but I didn't understand him. What is more, arrived home to find letter already cancelling my post op in 8 weeks. He fitted a mirena coil which I was only expecting him to do if he found endo and took biopsies which I found out from reading my discharge Form. Not that I mind but it wasn't discussed with me and I don't know why they were taken.

Shouldn't I have some kind of checkup after a mirena coil? I wasn't told anything about that but I'm sure you are meant to have a 3 week checkup to make sure all is well.

Sorry for the long message but I really have no idea what is going on.

[Tboag]

If I was you I would give his secretary a call and ask for him to ring you, write down a few questions for him,

What biopsy did he take, if there wasn't any endo present,

I had Adenomyosis which is similar to endo but it grows in the wall of the uterus, that the only thing I can think of with regards to that,

I hope you get your answers,

Is your surgeon a general gyne or a endo specialist?

Xx

[HannahBee1 in reply to Tboag]

Thanks for your reply,

He is a general gynae/obstetrician so not an endo specialist....I had also wondered about adenomyosis as I'm sure there must be a reason behind the constant painful bleeding. How was yours diagnosed if you don't mind me asking? I think he did mention that he thought there may be something in the wall of the bladder or uterus or something but I was too out of it to really take in anything other than that there was nothing found

Thanks again for your reply, feeling rather despondent and upset about it all xx

[Tboag in reply to HannahBee1]

Firstly, my gyne mentioned it after a chat and an internal, he said my uterus was bulky, and then I had a lap, removal of endo and the adeno was confirmed, large bulky uterus, twisted and tilted,

It's difficult to diagnose sometimes, I had awful painful periods, but not really heavy bleeding, lots of clots though,

X

[HannahBee1 in reply to Tboag]

Thanks I will mention it to him, I have enormous clots that I have to push to pass (sorry tmi). What treatment did they give you? Really hope you are feeling better xx

[Tboag in reply to HannahBee1]

Please don't jump to any consult ions about this, adeno is only curable by a hysterectomy, can be helped in similar ways to endo, ie hormones diet, etc,

You really need to ring them, and get your answers,

When is your next appointment,

[HannahBee1 in reply to Tboag]

No don't worry I won't do, it could also be something related to my PCOS I think....it's just very useful to talk through other possibilities as the only diagnosis ever mentioned was endo which it turns out I don't have. I don't know when my next appt is as I got home from the hospital to find a letter cancelling the follow up so I have to wait for them to contact me.

[pinkypop]

hi hannahbee 1

i have similar symptoms like yours . i;m suffering since 2011 . i have severe pelvic pain , chronic everyday pain , ovulation pain , vulvodynia , uti -becomes very severe 10 days before menstruation but no bleeding .i have severe pain all through the month but normal bleeding .Had a d-lap last month , my ob/gyn though not an endo specialist said pelvis is clear -no evidence of endo . I'm unmarried , no kids .i don't want to live with this debilitating pain which destroys my life .after surgery , she said it could be adenomyosis -but my uterus is of normal size and no enlargement . can adeno be present in normal uterus ? can u pls ask your ob -gyn ?pls let me know of your treatment paln - ler's keep in touch -warm regards -pinkypop

[Naomi1002]

Call then and ask for answers. You need to know what is going on. Write all questions down and make sure you get your answers.

Good luck

[HannahBee1]

Thanks again for the replies,

I'm heading to my gp today just to find out about aftercare for stitches and coil etc and I will talk it through with him as he is very supportive and then call the consultant when I get back. Sorry to hear of your problems pinkypop, I will definitely keep you posted.

Is it possible that he has missed something on the lap? I feel like I should just accept his answer as he is the expert however I am still left with continence issues, bleeding heavily and constantly which I'm sure can't be good for me! Xx

[hannadarb]

Hi I had a negative result when I had a lap, they found that my left fallopian tube was attached to my bowel, they said that they could remove the fallopian tube but it probably wouldn't prove beneficial. I opted to have it removed as I'd suffered 20 odd years of pain and symptoms similar to yours, when the tube was removed they discovered endometriosis underneath. Now I'm not suggesting you demand to have anything removed or any other operations unless you feel the need, just thought I'd let you know that sometimes endometriosis is hard to find.

You can always message me with any questions,

Hope this helps yo, because lime you when I was told the negative result, I thought it was all in my head and that I was imaging the symptoms and pain.

Always remember that you know your own body best, no one else feels or knows the symptoms you are going through.

[HannahBee1 in reply to hannadarb]

Thanks so much for this, when I first got the results I was so loopy on morphine that I really felt that people would think it was all in my head and just wanted to cry all the time. I know there is something wrong because of the urine leaking and constant bleeding so although I certainly don't want any unnecessary surgery or anything like that I am very concerned that I am no closer to a diagnosis

I will see if I am offered another follow up as mine was cancelled the day of the op, if not might see whether anybody can give me a second opinion from the pics that he took.

Thanks again for the message and support, it is easy to feel a bit hopeless in this situation! Xx

[hannadarb in reply to HannahBee1]

That's exactly how you can feel, but people on here are very supportive. It's difficult with things like endo and adenomyosis, which I also was found to have, as they can't be seen so people don't know by looking at you that there is something wrong, they may just think you can't be bothered to work or that you make up the pain! Keep strong and push for a diagnosis, don't let anyone in the medical profession fob you off.

[pinkypop]

hi hannadarb

i suffer from severe uterine pain /excrutiating pain all through the month , very severe ovulation pain in the mid cycle , recurrent uti, rectal stabbing ,vular itching -so i have pain all over the pelvic region . i had a d-lap only to be told negative endo .as you said sometimes endo is difficult to find .does anyone know anything abt early stage endometriosis ?

[HannahBee1]

I don't know much I'm afraid, if I find anything out that is useful I will let you know! Sorry to hear you have been suffering. Were your urinary infections confirmed? I was treated with antibiotics on multiple occasions for uti even though no infection showed up on testing because my GP didn't know what else to do until eventually I couldn't hold urine in my bladder at all. It might be worth asking about being treated with medication for overactive bladder. I am sure there must be an underlying reason my bladder became so overactive but this has at least offered me some relief for this particular symptom.

[27gems]

Good morning, I'm not sure if your still on this group but was wondering what the final findings were??I had 4 or 5 laparosopies completed to find endometriosis- and it was removed from ovaries - advised by the gynaecologist that it hides around the ovaries and causes worst pain and also that it can be invisible so that's why they take biopsies to confirm (? It could still be missed if biopsy taken where the endometriosis isn't growing!???).

I tried Mirena twice - HELL both times.

I had MRI with contrast which found Adenomyosis and now left with 2 crap options - Male Hormones or Major Surgery; as Uterus stuck to bowels - and the knowledge that Endometriosis can still grow back.

The urinary urgency and bowel symptoms really cause me issues with life - find unable to work as I'm in pain bloating/diarrhea/spasms/occasions of incontinence- even had multiple bleeding episodes from my bowels which has been ignored for years......

Sorry waffling here - but just wondered if you found out if PCOS or other cause for your symptoms.