Diagnosis Questions

[MANDAHARTLE]

I had a Laparoscopy a week ago for suspected endometriosis. I have all the classic symptoms I was really hoping that the operation would give me a diagnosis and that something positive might be done during surgery to rid me of the painful pelvic pain that plagues me every month.

As I was recovering on the ward the consultant came round and informed me that no endometriosis was found and that everything looked healthy and a referral had been made for me at a pain clinic. I know that this should make me happy and thankful that I don't have endometriosis but I feel that I am back to square one with no explanation for symptoms that see me struggling to cope every month.

Since it was suggested that endometriosis was the cause of my pain about 3 years ago I felt convinced that this matched all my symptoms and must the reason for the pain, now that that has been dismissed I feel a bit lost and almost as though people must think that I made it all up and there is nothing wrong with me. I went to see my GP yesterday and she basically told me that I have had all the necessary tests and that it is probably the end of the road in term of trying to get a diagnosis! I feel really let down and as though I have been left to deal with my painful symptoms alone.

I am glad that I don't have endo and I am sure that there are lots of women who would love to be in my position, but I feel really low and apprehensive about the future because I know the pain will still be there.

I was just wondering if anyone else has experience of this, advice and help would be great!

[shukudai]

Here! I am the same. I had laparoscopy in 2011. They suspected endo but they found no endo inside me. All they found was adhesion. I am still in pain and actually the pain is getting worse and worse since 2011. I was referred to Pelvic pain clinic which supposed to help me for unknown caused women's pain. I see my consultant only every 6 months and it already passed 2 years and nothing changed, well the pain is even worse a lot.

I am sorry I can't give a better news. I would be grateful if someone give us a good advice...

Oh one thing. All the painkiller failed to work, TENS machine is doing quite well. I use it twice (or bit more) a day and take painkiller and the pain seems a bit better sometime.

Take care...

[Impatient]

Just because they didn't find active endo doesn't mean you don't have endo or possibly adenomyosis (which is hidden inside the muscle walls of the uterus and cannot be seen during a lap op). All it means is they didn't find it and if you do have it, it is not extensive and is not impacting on your fertility at this point in time, which is the great news.

Adhesions can mimic the pain of endo and can in fact be an even bigger pain issue than endo, and with each operation more adhesions will form each time. that is protective scar tissue that your body will produce as a barrier when you have been injured or suffered some trauma. They can keep on growing and glue organs together and out of their normal place, they can grow aound the bowel and vagina and cervix constricting them from working properly and cause pain when those organs are stretched.

Like you have a really strong sticking plaster across your skin, when you try and peal it off or move the skin it really pulls and tears from the plaster and it hurts as soon as you try to do that and for some time afterwards. Then it grows again on those wounds and it becomes a cycle of damage and repair, damage and repair.

Adhesions can be cut back in surgery but it is only a temporary fix and they will grow again and they will grow to the point where they start irritating and pulling on nerve endings and hurting you. This cannot be stopped but it can be cut back like a bramble bush every so often.

If your pains are worse when you have a period then you have to stop having your periods by whatever of the many methods best suits you.

BC pills (various kinds to try out), norethisterone, mirena coil, arm implant etc.

This is in addition to going to the pain management clinics to find exercises and different ways to cope with pain that has no known cause at this time.

[little-m]

Hiya I'm actually quite relieved to see your post in all honesty. Not because I would wish that on anyone, but I now feel less alone! I had the same thing happen in 2010, and again a few weeks ago. I was expecting (both times) to wake up and be told I had endo as I fitted most of the symptoms. Both times, they said there was no endo to be seen. My first lap was not done well, so I had to be re-referred to check they hadn't missed endo. But woke up from my lap 5 weeks ago and yet again, they told me no endo. The consultant did mention that he thinks it's adenomyosis (as Impatient mentioned above) so got follow up next Tues to chat over his 'thoughts'.

I was told a similar thing by consultants etc that 'there's no more roads left to go down', they even told me I would just be classed as 'having bad pain' but I'm sorry, that doesn't cut it really. Surely being in THIS much pain THIS often means that something is not right. I'm going back to see the consultant armed with questions (and my husband) to figure out what he really thinks. And if he isn't certain I'm going to push for more tests.

Do you take anyone with you to appointments? It might be worth it if you can in future. Unfortunately it seems they take you more seriously when you've got 'back up'. I used to go by myself and got pushed around and left alone so often. Now with my husband there, even if I start to backdown or get emotional, he won't. It doesn't have to be a boyfriend of husband, a family member or close friend or colleague will be just as good. Just prep together before you go in so you know you have the same goals!!

My consultant this time around (bless him he's really good) told me also, prior to my lap, that even if they don't find endo, it doesn't mean it's not there, just means it's not seen. I think sometimes they word it in such a way that makes you feel like you're silly. You're not silly, you know what it feels like.

I've started this year keeping a diary of my pain, recording what I eat, my pain on a scale of 1 -10 (based on mankoski pain scale - recommended by a nurse), what my bowel is like, what meds I take, if I use anything else to help the pain (e.g. hot water bottle, tens etc), what activities I've done that day etc etc... Even if they don't pay a load of attention to it, it may help you track a pattern or figure out ways to help yourself when the consultants are being less than helpful.

Sorry this is so long, did not mean it to be at all!

Take care, I hope you get some answers!!! xx

[MANDAHARTLE in reply to little-m]

Thanks so much for your response its good to know that other people have gone through the same thing. I will wait for my appointment at the pain clinic and then formulate a plan of action from there! Hopefully I will get some answers to whats causing the pain.

I would be really interested to hear how your appointment goes with regards to adenomyosis, good luck and thanks for the advice!

manda

[little-m in reply to MANDAHARTLE]

Bless you, ok I'll try to remember to comment back about it. Here's hoping for some more clues. I trust his judgement, but equally I would rather have a definitive answer than a maybe! We'll see.

That's the great thing about these sites, a good way to support each other when there's not much else going for us. Take care x