Help!!!

[bex89]

I posted a question here last week and thank you for the help and advice, it was quite reassuring which I guess is why I am back.

I have now been for a transabdominal ultrasound and they have found nothing abnormal which I suppose in some ways is good but I still don't know what is wrong and I'm back at the bottom of a waiting list for a gyne apointment.

Only in the last few week have I started talking to anyone other than my mother about my problems and its now I see that its not right but she makes me feel like I'm being silly and a bit of a hypochondriac cause its what she has gone through for years she reckons. I don't know what is and isn't normal as over my period I have to change a super tampon every 2-3 hours and wear a pad as clots will come down past, I have heavy cramping in my lower left side of my pelvis and BM changes determined to where I am in my cycle. It also seems no matter how much sleep I get I am always tired. I keep being told it can't be that bad and to just get on with it.

Is this normal and whats the next step after a clear ultra sound?

[MrsPanda]

Hi there, sorry you're having such a rough time of it,

To be honest, your symptoms sound exactly like endo, but unfortunately I think endo itself doesn't actually show up on a scan (it only shows up if you have adhesions, where your organs are stuck together from the endo - this came up on my scan and explained the stabbing pains I've had in my side for the last few months since I came off the pill)

The only way to 100% diagnose endo is to have a laparoscopy, so I guess the next stage is to push for that when you eventually get a gynae appt (some of the other ladies here might be able to offer more helpful advice!). Has your GP ordered any blood tests at all?

From the sound of it, your mum may have endo too! My mum battled with heavy, painful periods for years, and only found out it was endo when she went in to be sterilised in her 40s, and the sugeon informed her in a v offhand way after her operation "Oh and you know you have endo too, by the way?"

xxxxx

[bex89 in reply to MrsPanda]

No blood tests have been asked for. What would that show up if anything?

I do wonder if what I have is what mam has gone through too but she has such a fear of drs shed rather put up with the pain I think!

Xx

[Maniks]

Hi bex69

Reading your post brought tears to my eyes!! it sounds like you are in the same place I was 14 years ago. I am now 35 years old but I suffered with similar symptoms to the ones that you describe and was constantly told by my GP its normal, you're having a bad period blah blah blah! It took 4 years and 3 demands from my local family planning clinic before my GP would even refer me to the Gynae! I finally had a laparoscopy on the NHS and was told that there was hardly any Endo visible and they didn't know why I was in so much pain. Even after recovering from surgery the pain was still there, even my GP thought it was all in my head!! 6 weeks after this operation I went in for the same operation under private healthcare. As it turned out I had sever Endo, womb and bowels were stuck together, right ovary was stuck to itself and left ovary was stuck to my womb. I have since had 8 laparoscopies to remove the Endo that seems to come back every 2 or 3 years. Ive now got to a point where Ive had enough of the pain and the operation routines I am having a hysterectomy at the end of this month. In addition to the reoccurring Endo I now also have 21 cysts across both ovaries. If Im honest Im petrified of having the hysterectomy as I am now being treated by the NHS again!! The private healthcare that used to treat me is provided by Benenden Healthcare Society. The cant treat me anymore as their policy changed last year and they can no longer treat reoccurring conditions, this devastated me. However as you have not been treated by them before they will treat you and they are amazing!! It costs something like £1.25 per week and works in conjunction with the NHS. If the wait on the NHS is longer than about 5 weeks you get seen by Benenden and quickly. Its worth every penny, not that its expensive at £1.25 per week. You will have to be a member for 6 months before you can use the service but that will fly by and gives you an alternative to the NHS.

For clarity, you can only see Endo on an MRI scan or via laparoscopy. There is no other way of confirming Endo! Ive had everything tried on me over the years and these are the 2 best ways to confirm it. The MRI will show the thickness of the tissues, an expert consultant should be able to confirm Endo from the MRI results. I hope that helps and wish you all the best in getting to the bottom of it. In the meantime, hot baths, Ibuprofen, vitamin B6 50mg are things that can help with pain management and mood swings caused by hormonal imbalance. I cant be without my B6 when Im at my worst but it has to be 50mg and nothing below otherwise it doesnt work.

Good luck

[bex89 in reply to Maniks]

I think I will look into that private that you have suggested as the NHS have been very hard going so far. It took 5 different drs, one telling me outright that some women were just unfortunate and 2 telling me the pain was all in my head as was usually the case with chronic pelvic pain. This is despite having gone to them with pelvic infections and a miscarriage in the past which again I wasn't happy with how I was Treated. I am on anti depressants for my moods and have been for 4 years but that has had a lot to do with circumstance as well. It took one dr questioning the amount of times I had been tested for stds with negative results for anything to be looked into even slightly further. I swear by the heat pads cause I can wear them under my clothes t work. Soothing slightly if nothing else! Thank you for your advice and good luck with everything.

Xxx

[AlexR]

Hey hope everyone is having a good day. I have been battling with different doctors for years and years always fobbed off and made to feel it was all in my head. I have extreme pains in my left side that shot across and to my belly button sometimes finding it hard to sit down as i got shooting pains down below as well. abdomen would swell up making me look pregnant to point my partners friend commented one day youve got a belly piling on some pounds i am skinny but due to an ex always very self concious about myself. I went to the doc while it was swollen up and was told it'll jst be bloating or a poss cyst but not to do anything it'll pass. When i was 19 i had a scan nothing was found so nothing more was done finally was sent for one this year now 28 again nothing found but was referred to a gyno after i demanded. Gyno check me over couldnt see anything said could do a lap op but ive prob jst got ibs or bad cramps/spasms try an anti spasm i put a spanner in his works when i told him i already take them along with tramadol and solpadol for a lower back/pelvis injury. So had lap op start of july nurse blurted out i had endo when she read my chart then ran off before i could say anything had to wait 20mins or so til the gyno/surgeon came over and he was slightly apologetic that he didnt take me seriously with my pains as alot was found and he removed as much as he could. My own GP female one has been ok since after me op but the male one has been horrible even still making me think maybe all the pains im having now are in my head, my wounds have just healed from it and when i went to him they werent but he still pressed my stomach like he was kneading doug! and told me i dont need the painkillers im on, ive been on them for 3-4 years. Seems doctors dont really care about this. If i couldve done it all again i wouldve gone private years ago had my pains investigated properly. At least private doctors seem to take you seriously. I suffer from depression now as well doctor has recently put me on tabs for that aswell. I have been told from another woman about pain patch as i hate taking all these pills. Find it hard to function properly.

I hope you get taken seriously and your pains investigated properly xx

[Juleyanne in reply to AlexR]

Life with endo and adhesions is like being in a witness box for the duration of this horrible condition. This is often for many many years and

along with all the symptoms, pain, investigations and surgery is utterly exhausting and soul destroying! I still recall the comments of a friend

no longer in my life! after a laparoscopy and hysteroscopy revealed extensive endo and adhesions which had glued my ovary to my bowel

and a fallopian tube stump previously removed due to endo damage and adhesions had re glued the other side plus it had travelled into my stomach. She clearly previously thought I was 'putting in on' and had made some downright cruel comments before responding to me post op at my hospital bedside saying ....."now you are vindicated"! This is an example of what we as endo adhesion suffers endure daily on our painful journey!