I NEED TO TELL MY STORY TO SOMEONE.......

[hamish123]

I AM A 29 YEAR OLD WITH TWO SMALL CHILDREN. LAST JUNE I STARTED TO HAVE A DULL ACHE IN MY LEFT SIDE/LOWER BACK. I THOUGHT IT MAY BE A URINE INFECTION AS I HAVE HAD A FEW BEFORE AND GOT SOME ANTIBIOTICS FROM THE GP. THE PAIN GOT MUCH WORSE SO I TOOK TRAMADOL. AFTER A FEW DAYS I COULDNT STAND THE PAIN AND FELT VERY UNWELL SO I WENT TO THE HOSPITAL. THEY PUT ME STRAIGHT ON UROLOGY AS THEY THOUGHT DUE TO MY PAST BLADDER PROBLEMS IT MUST BE DUE TO THAT.... I HAD ULTRA SOUNDS AND SPECIAL X-RAYS OF BLADDER AND KIDNEYS.... ALL NORMAL.... I WAS DISHARGED AFTER 10 DAYS.... AND THE PAIN SEEMED TO BE MANAGABLE ON ANTI-INFLAMATORIES. I WAS TOLD TO GO BACK IN 6 WEEKS FOR A CHECK-UP. IN THAT TIME I WAS BACK AND FOURTH TO THE GPS AND HOSPITAL WITH THE SAME PAINS WHICH WERE GETTING MUCH WORSE. I WAS GIVEN ORAL MORPHINE. MY UROLOGIST SENT ME FOR A CT SCAN WHICH I HAD IN DECEMBER 2012. THIS SHOWED UP ENLARGED LYMPTH NODES IN STOMACH AND BOWEL WHICH HAVE BEEN LOOKED AT BY A GASTRO DOCTOR AND TOLD ME THESE WOULDNT BE CAUSING MY PAIN. THE CT ALSO SHOWED ENLARGED UTERUS AND SMALL CYSTS ON OVARIES. SO I WAS REFERRED TO A GYNAE. ONLY THEN WAS I ASKED ABOUT HOW MY PERIODS ARE AND BEING A WOMAN I FOUND IT STRANGE THAT ID NEVER BEEN ASKED BEFORE. MY PERIODS STARTED WHEN I WAS 11, THEY WERE VERY HEAVY STRAIGHT AWAY AND SO PAINFUL I MISSED SCHOOL. MY MUM TOOK ME TO THE GPS WHO PUT ME ON A PILL WHICH DID HELP SLIGHTLY. SINCE MY SECOND CHILD IN 2010 MY PEROIDS ARE TERRIBLE. SO PAINFUL, CLOTS VERY VERY BIG, FLOOD MY BED ECT. ANYWAY, THE GYNAE HAS BOOKED IN FOR A LAPEROSCOPY 25 JUNE AS SHE THINKS I MAY HAVE ENDO. I REALLY HOPE I GET SOME ANSWERS AS I CANT COPE WITH THE PAIN ANYMORE. I ALSO SEEM TO BE A LOT WORSE THE LAST COUPLE OF WEEKS, I AM SO TIRED ALL THE TIME, ITS HARD WORK TO WALK UPSTAIRS OR DO DAILY CHORES. I FEEL LIKE SUCH A BURDEN ALL THE TIME AND I HATE MY CHILDREN SEEING ME SO UNWELL. ITS HARD TO EXPLAIN HOW BAD I FEEL WHEN I STILL DONT DONT WHATS WRONG WITH ME! A LIST OF MY SYMPTOMS ARE PAIN IN LOWER LEFT SIDE(FLANK) AND BACK, (EXRUCIATING AT TIMES),LOWER PELVIC CRAMPING AT ANY TIME, NOT JUST ON A PERIOD, TIREDNESS,PAINFULL URINATION,HEAVY BLEEDING,BLOATING. I SEEM TO GET FLARE UPS AS I CAN GO MAYBE 3 WEEKS WERE I FEEL NORMAL, I WILL ALWAYS WAKE UP WITH THE BACK PAIN BUT TAKE REGULAR PAIN KILLERS ANYWAY. BUT THEN I WILL GET A "FLARE UP" AND I AM IN AGONY! PLEASE HELP... DOES THIS SOUND LIKE ENDO?????

[nettet]

Hi

This sound exactly like me. I feel your pain and hope that you get a diagnosis soon. It was endometriosis for me, quite bad by the time they finally diagnosed it. I like you, used to have time when I had lower level pain and then time when it was terrible. As it got worse for me though the good day got less and less and I basically got to the point I couldn't work and some days I couldn't even get out of the house..I had 2 ops last year and feel so much better. I'm back to working pretty much full time and don't have to take pain killers everyday just to function. So stick with it, and don't let the doctors fob you of!!

I would recommend asking your gp for amitriptyline (10mg or 20mg) to help with the pain. It works by inhibiting the pain receptors in the brain so you don't perceive the pain in the same way. Obviously it might not be right for you, but it was a god send for me and helped me to stop taking so many really strong painkillers.

Best wishes with the lap, hope it can give you some answers. I know it feels like you're alone and that you're a burden but it's just this disease and it's not you! Try and say positive and remember that you're not alone!

Nette xx

[Jillanovitch]

Yep definitely Endo, it won't show up on a normal scan only through larascopy (camera in belly) yep the bloating, flare ups, back ache excruciating pain. The cysts are usually called by endo and so are adhesions....good luck I do hope it's something treatable. X

[boudy14]

I am sorry t hear of the long drawn out process you have been involved in. Unfortunately this is so the story with endo.

There are lots of things you can try to make your endo better, take calcium, lots of vitamin c, magnesium and have a lot and the end diet..some find not eating gluten helpful but for me it was eating lots of fruit and veg every day

best of luck

[Ns2kjs]

Hi Hamish123,

I agree with the above, you definitely appear to have endometriosis and your situation sounds exactly the same as me. I'm 29, when I was 10 started with periods that lasted 3 weeks and were horribly heavy and still problematic now. Mine was diagnosed because my appendix burst nd when sent off it was smothered by endometrriosis cells.The bonus is you are getting your laparoscopy sooner rather than later, I waited and waited with the pain and on my lap I had stage 4 endo with involvement to other organs and I don't have any children. No more chance of any either as need to have a hysterectomy to get rid of the cells.

My advice: think long and hard about what you would do if it was endo, what would you want? Because a lap can diagnose and remove some cells but can't cure it, you can continue to have laps but then you have issues of scar tissue and infection etc. if you are happy with your family unit and don't 'want' any more children perhaps you should make sure your gynae surgeon is aware at your follow up etc.

For now, good luck with the lap hopefully as you are young you will be back up and about quickly (I was back to work in ICU in 5 days) and you will get answers and be able to work from there. I completely empathise with you and your tiredness etc its a horrible disease but once you have some treatment it should give you several months if not more pain free at least while they sort something long term xx

Take care x

[b1ackr05e]

Sounds horrific I just wanted to say that if you get a diagnosis of endo that will be a good thing, as they can try different methods of treating it. They will also be able to treat it surgically as well and should be able to cut out or laser some of it, and that should give you some relief. Fingers crossed for you - come back after and let us know what happened. Good luck x

[cupcakegirl]

Your story sounds very common, and your symptoms coupled with the mainly clear CT scan suggest Endo. I would also speak to the gynae about the fact that your uterus appears to be enlarged - this could well be adenomyosis, which is where Endo deposits grow in the muscle wall of the uterus. This is usually treated with hormonal treatments since it can only be treated surgically by a hysterectomy - this is an absolute last resort though, there are many treatment options to try first.

If your lap is clear, it could be that you have adenomyosis rather than endometriosis, or you may have both.

My periods started at 12 and my pelvic pain started a few days before my first period - after a couple of years of heavy three-week long periods they put me on the pill. By the time I was at uni, I was in pain every day but wasn't taken seriously. Every time I ate I had intense bowel spasms followed by diarrhoea and my periods were still excruciating. After multiple emergency hospital admissions, I was given an emergency lap which was "clear" - they told me there was nothing physically wrong with me and I should see a psychiatrist. It took another 18 months of constantly being in hospital and a lap at a different hospital after moving home before I was eventually diagnosed in 2004 - it was only when I got a copy of my notes from the first hospital that I found out I was in theatre for under ten minutes and they didn't make any incisions to insert instruments, just the camera and gas, so they couldn't move anything out of the way to look.

Since 2004, I've been on morphine or other opioids daily and I've tried every hormonal treatment, and had four further laps. I have mild to moderate Endo but severe daily pain - I used to be under an excellent pain specialist who explained that my nerves are damaged from so many years of pain and the surgeries, and they are hyper sensitive to any pain stimulus. There's obviously not much that can be done about this so at one point I was on 1,000mg of morphine a day - now I've managed to reduce it to 600mg but struggling t reduce it further. I am 31 and have been on morphine daily for 9 years, I have no sex drive due to side effects from one treatment which never went away even though I stopped years ago, and I have ME (they think - or maybe Lupus as I now have awful joint pain) so my fatigue is unbearable. Fatigue is common with Endo, I users to feel tired a lot, but now it's much worse - I'm housebound 95% of the time and have had to stop working. Because of all this, even if my fertility is fine, there's no way I can have kids.

There are other ladies who are much worse off than me, and many more who have the op, take a mild hormonal treatment like the pill/pill injection etc. and never have any problems again. This has been a long winded way of saying that everyone is different with this disease - we all react differently to the Endo itself, as well as to the treatments. You're more likely to hear about the severe cases here whereas there are many women who are fine and don't need boards like this, so don't let yourself get concerned by the stories you hear.

Did your gynae say whether they would remove Endo if they find it, or are they just looking and will do more surgery later if there's anything to treat? Sadly because of scheduling, they'll only schedule time for a diagnostic lap and there's no time to remove what they find, so you end up having to have a further op to treat the deposits which can cause more scarring and pain. If I was in this position, I would ask them to treat mild Endo if they find it - they might not, but just asking could save you another op. Of course if it's mild you might do better with a hormonal treatment than surgery - as someone who has mild Endo and severe pain, I find I only get a few weeks of improvement from a lap before my symptoms return in full.

Be very wary of any gynae who states that a hysterectomy is a cure for Endo - Endo is incurable so this is not the case. If they leave your ovaries behind, the oestrogen will feed the Endo. If they take them away, you'll go straight into surgical menopause - and I'd you take HRT, this can feed the Endo too. Although there are some women who find things improve after a hyst, I know many who are much worse off afterwards - they still have the Endo and the pain, plus serious scarring and related problems to major surgery, plus some gynaes don't take them seriously. It's worth exploring every possible avenue before considering this including drugs that put you into a temporary menopause.

The only caveat to this is if you have adenomyosis and not Endo as a hyst could help then - but sadly it's very hard to diagnose without actually performing a hyst and sending off a sample.

Let us know when you've had your lap and what the outcome is - there will undoubtedly be women here with the same kin of results who can advise.

Take care

X

PS You might want to use lowercase for your next message - its hard to read all capitals, and in Internet speak it means you're shouting!

[crystalgirl]

Hi It does sound like Endo,the pain is unbeliveable,but did get relief from Evening Primrose,I am not a fan of HRT as it is very difficult to get the mix right as everybody is differant.But if you can get your pain to be in the background ,endo will be mangeable Crystalgirl

[Victoria323]

That sounds awful but all too familiar. I was admitted to hospital last November with exactly the same pain in my right flank and was discharged after 7 days following all the usual tests. It turns out that I have endo in my ureter. After 4 stents to try and open the tubes I am going in for surgery and reimplantation of my ureter into my bladder as well as removal of any endo tissue that they can find. I currently run 3 packs of the pill (Microgynon) together and have found that with each cycle the pain has been less and I can carry on with a relatively normal life. I really hope that they can alleviate some of your symptoms and it does sound a lot like endometriosis. Like you I had pain in my lower back on and off for years and as a consequence have changed my bed 3 times as I thought that was the reason. Just think of the money I could have saved if I had found out earlier he he.

On a positive note, if you do get a positive diagnosis you have so many options available to you and I must admit the treatment that I have received has been top notch. Good luck and chin up, you are in good company.

[hamish123]

Thank you so much for the comments. Unfortunately I am in hospital for pain relief so I will keep you updated.

[brimcd]

sorry this is late, but yes it sounds like endo to me. but knowing doesn't really mean it will do you any good. i was diagnosed in nov 2012 had surgery to remove the endo in may 2013 and come december 2013 everything has come back. it's a daily struggle you will have to face. one thing that helps me is just take it one day at a time. don't make plans for 2 weeks from now, chances are you won;t be able to keep them. try planning for 3-4 days in advance. hope this helps

[Mickie1821]

I had the same thing. I had an endo polyp in my uterus about 2 inches long and an inch wide. My Gyno Dr. Went in and did a lycrospy and removed it but now Im having the same pain and she told me the polyps could come back. I have suffered from endometriosis since I was 12. Birth control doesnt help it. The pain is excruciating. The blood clots are so thick, I have to sit in a hot bath for an hour to get them to loosen up. The only thing that helped mine was getting pregnant because it shed all the lining. Even now, Im 26 and the pain is just as bad as now as it was when I was 12. I hope you get help and I hope you feel better. Maybe your Dr. Will figure out whats wrong.