Severe abdominal pain not the normal pain endo gives me any advice??

[Kimf85]

I have stage 3 endo, last lap was Jan 2013. It didn't make much difference so gyn started zolodex course for six months, it was fab no pain at all from start to finish. Had my last one beginning of oct and didn't have any pain until Saturday just gone. It started sat night the normal aching pulling pain nothing major thought I was ovulating as had major clear mucous discharge too. However days wore on pooing started to hurt, cut to yesterday passing wind was agony couldn't stand up it was soooo painful. Hubby came home tried to get me to go to a an de, I said no rang gyn he was pretty certain it isn't endo as it came so quick, so went off to gp. Told him the whole story he poked my abdo I cried it hurt so much. Gave me lovely painkillers and orders bloods for this am and booked appt with duty dr this afternoon for results. So the painkillers worked ok (I can walk...sort off) it still hurts like hell I feel dizzy I'm white as a sheet and my abdomen is swollen. It's not my normal endo pain, different place, different type of pain and stronger than mid stage labour pains. Dr tonight said bloods were inconclusive all my obs were ok carry on taking pain meds come back next week............. My worries are ectopic pg, endo in bowel or something else. What would you guys do?....

[daffodil]

Oh -definitely go to A and E especially if you think it could be an ectopic pregnancy.Would you belive I am in exactly same position at moment after comiin ff Depo Provera.It can come back with a vengeanced -each treatment I have had has given relief( pill,Depo,synarel,Decapeptyl) but as soon as I stop its like the endo is just waiting!I have been fobbed off by my Gp with tramadol and paracetamol,which don't touch the pain and antibiotics for a UTI which do seem to be easing some of the pains,but I have a dreadful pain in what I would say is my colon and around tummty buttonI think this is endo on or even in my bowel,but Gp saying it all the UTI. better.It makes me angry that medics don't seem to understand the extent of the pain,tell us we may get addicted etc.

Please get help - out of hours,A and Eor if really extreme call an ambulance.Do let us know how things go and know that lots will understand what you going through.

[misty528 in reply to daffodil]

Hi ladies my names is Misty... I've dealt with for the last 10 almost 11 years.... I have been to 6 different doctors even went out if town thinking someone Would help, but no nothing no help at all besides giving pain meds which like you said didn't even take the edge off... I have had 4 surgeries to remove the endo including a hystorectomy last yr which didn't help one bit because the idiot Dr left my ovaries because he said I only had a few spot if endo and he took care of it... Obviously when he did that he should have known as long as the ovaries are there it will continue to return.... So sure enough two Weeks after surgery I was hurting again:(.... Well I went to my family Dr because of the pain patting that maybe he could see something that the others didn't see had a ct scan and he referred me to another gyno.... I was so iffy about going to yet another Dr that probably tell me the same thing but I went anyway well I went in and sat there from 1-6:30 to be seen... When she finally came in she did a pelvic exam and pressed on my stomach a little horrible pain enough to low on the bed and cry the whole time... She told me she wanted a ultrasound and a ct... I told her I had just had one done a couple months before so she told me to bring her the report so I did even better I brought her every ct and alysa's I had had from the last 4 yrs...wow that was a stack... Well she finally called and said she wanted me to come in for yet another ultrasound which was also so painful I could barely lie through!! Well as soon as that was fine the Dr cane in and looked at the report and said ok I saw a spot in the abdominal wahl on one of the ultrasound from before your hysto the spot is small about 2x2 by 2x2 cm... Well she looked at thsame spot on the ultrasound I had just had and it had grown to 3x6 inches in a year time... She scheduled me for a lap for that Friday to go in and see and remove it!! Well i went in on a Friday morning in October it was suppose to be about a45 min surgery well I came out almost 5 hrs later with my stomach cut from one side to the other... She had to take 18 inches across my stomach and 6 inches up and down from the abdominal wall took so much out she had to pretty much do a tummy tuck so I would have a flap of skin hanging down....they removed my left ovary which was encased in endo and she cut out my csection scar and removed some small spots in the abdomen.. She said it was the worst case she had ever seen and didn't know how I've felt with the pain ask these years.... I'm sharing my story ladies because there us hope I have been smart 2 months with no pain it is a amazing feeling!! she told me that alot if 411 don't look in the abdominal wahl when you say you are hurting they always assume its in the abdomen not the wall.... It took 10 long years for someone to finally figure out what was right in front of them the while time... Good luck ladies and maybe you can use this story to help you out...i wouldn't wish endo on my worst enemy!! <3 Misty

[Impatient]

The major clear mucus is your libido returning -proving the drug is pretty much no longer in big enough supply to switch off the glands that ubricate the vagina- the fact it is clear is great news as that rules out any infections down below. and the more lubrication you have there the better the moisturisation of the vaginal wall can recover.

That part is a normal reaction. It feels a bit like over drive- but you will have got used to not having natural lubrication and the dry cells are not yet used to absorbing the mucus, so it tends to slide on out of there more than it normally would at first.

Muscus side of things your okay.

I am guessing that the blood tests came back negative for pregnancy, ectopic or otherwise- else they would have kept you in for surgery.

These pains could be ovulation pains or even pre-1st period in ages cramps.

OR constipation or bowel blockage pains of some sort.

My period started in week 8 after the last implant went in., i had the 1 month of the drug doing its thing -then 4 weeks later a Period ...Arghhhhhh. I was so annoyed.

By that stage I knew most ladies had on average a 5 month wait so to start again so soon was rather soul destroying after just an awful experience- i really was hoping for a longer break without zoladex and without periods too.

Did they at the hosp scan to check for a cyst by any chance?

It might be that you have had a dormant cyst, that is now refilling again, possibly stretching or leaking and causing this constant pain situation.

Is the pain at the front gynae region of ovaries and tubes- or would you say most of the pain is in the back passage area - or part of the bowel colon region?

I a trying to guage which is more likely - an angry or burst appendix, (which has nothing to do with the drugs),

a kidney stone trapped in the ureter tube from kidney to bladder - usually caused to build up by several weeks or months not taking on enough fluids- and dehydration is a real factor for zoladex- because you have so many hot sweats, which it is easy to forget are fluids that constantly need replacing- in which case the best solution for a kidney stone is to drink like a fish to flush the stone on its way and out of the body.

A kidney stone should show up on an x-ray...and cause wee samples to show high levels of certain chemicals too.

Or a twisted ovary stuck with adhesions (that would show up on a scan)

or an ectopic which would show up in a scan and in blood tests,

or a cyst which would show on a scan but wouldn't show on a blood test

or icky old constipation or fecal impaction itself or having caused diverticulitis or twisting of bowel or an intussusception of the gastric pipe work.

If the pain is close to the back hole- then a previous loo trip might have torn the bowel lining causing an anal fissure which is very painful in loo trips and in passing wind too- but that pain is specifically located at the injury site while it tries to heal. It shouldn't cause you to feel the pains in the front gynae region though. Just up the bum.

Lots of things it can be, and not all directly related to endo either.... or to the drug treatment.

a lot of these possible causes can be ruled out by have an x-ray and US scan at the hospital and wee and blood tests- which narrows down the possible causes even if they can't find a definite cause.

Strong pain killers are making you more comfy but masking the real problem.

If the pains re not regular period cramps or what you are familiar with in terms of endo pain then you know your body best and it is much more likely to be something else instead.

Wishing you a speedy solution and don't hesitate to go to A&E where they do hve the right equipment to test you for all the serious possible causes. Don't hang about either- if it does not look like it is easing up - get to the hosp asap.

[daffodil in reply to Impatient]

Thanks for your always informative info -are you a medic as you seem to know a lot?

[Impatient in reply to daffodil]

Not a medic- just old, decrepit and been through far too many medical hiccups in my lifetime. Lots of real life experience rather than text book ones...sadly !

[daffodil in reply to Impatient]

Ah sounds just like me!It is good that you can use bad experiences to support others,as it make such a difference to know we are not alone.I feel like crying when I read of young girls still being fobbed off and not taken seriously.I started with what I lknow now is endo,as age of 18 and was in hospital 3 weeks and no diagnosis,just mystery pain and stress!Was sent to a psychologist who said I seemed to be very angry and that I should just let my anger float away in coloured balloons! Somehow this would help the pain! Eventually diagnosed after second child,when came off long term pill.Now 48 and facing surgery again but terrified as with all my laps,sections Justwanted to say thanks for being online and sharing your story and advice- IT means a lot to us.

[Kimf85]

Hi, thanks for replies. I had routine haematology and bio chem which she said were 'inconclusive'. She completely ruled out a pg because 'u have a coil so it is impossible'. I'm tempted to stop the the pain meds to see how bad the true pain is now and if it's the same as yesterday just go to the hosp. I have a 2 yr old to look after , hubby is in the military so can't keep having time off to help me. I want to know what's going on too

[Kimf85]

Morning ladies

Pain is better today feel bruised and sore but can function also has mahoosive poop ( sorry tmi) so not constipation or compacted bowel , hooray!!! Only issue is discharge extra heavy this am and yellowish but not smelly going to keep an eye on it and try and get on with my life today xxx

[Impatient]

Glad you are feeling a bit more chipper today. See how things go. Wishing you all the best....and don't forget to call on mum. dad. inlaws, services welfare people or anyone that's a good friend to help take care of junior if you do need a break. They are not likely to volunteer if they think you are coping so don't be afraid to ask for help if you need it.

[Hidden]

Hi, I can really relate to your post. I am waiting for diagnostic lap but have been symptomatic of endo for 10-15 years. However my symptoms changed approx. 6 months ago. I always bloat a bit but the centre of my abdomen was intensely painful - difficult to describe but feels like a constant tight grip lasting for approx. 3 days. Initially it feels like trapped wind or constipation - but bearing down feels like you’re going to explode. I tried everything from yoga to peppermint tea & eventually knew that enough was enough when I was alternating between being on all fours like I was in labour to standing and sipping gripe water! The first couple of months I thought it was because I'd spent hours scrunched up at the computer studying, then I put it down to constipation but by my 3rd consecutive period I had to go off sick from work - a twenty minute car journey to work left me incapable of standing up fully. I was absolutely beside myself. So I went to my GP who listened & was great (trainee GP!) she thought it was best to wait for lap results before investigating colorectal but then asked if I'd ever been screened for Coeliac disease? She wondered whether I was maybe 'latent' coeliac which only became an issue when I was menstruating. She also prescribed me movicol to help avoid constipation. To cut a long story short - I am not coeliac but her theory resonated with me and I straight away started to eat a gluten free diet. I went bit nuts researching the possible link between gluten free diets & endo and found a lot of support for it along with the 'endo-resolved' diet which is also very well supported. However I also researched diets that were helpful for IBS seeing as the 'new' symptoms I was getting were more IBS than endo. I have found a lot of support for something called the FODMAP diet - devised by an Australian called Sue Shepherd. Unfortunately the 2 diets do contradict each other at times (e.g. Onion is recommended by the endo resolved diet but a strict no-no on the FODMAP diet) This restricts my diet a lot ... but... the last 2 months have been much more tolerable ( I have still had the same knotted feeling and cramps but much much much less disabling ). The crazy thing is that I'm sat here typing having had to take yesterday off work because I’ve had several slips this month and ended up back in agony yesterday on day 1 of this months period. For me this was clarification that diet is so important. As to what the cause is - I really don’t know & I am so hoping that I get a date soon for my lap because it is crazy trying to work this stuff out on my own! Hope this helps... I'd really recommend looking to adapt your diet though. In a nut shell I avoid red meat, gluten, soya, onion, oranges & apples completely. I only eat certain fruit & veg - esp. carrots, swede, cabbage, tomatoes, green beans, garden peas, bananas, and pineapple. I try where possible to avoid processed foods and refined sugars. I have swapped my pints of lager for GF lager or Vodka & coke if I go out. I have struggled to reduce dairy though! Oh and I've just invested in a TENS machine so I'm hoping that gets me through next month because I can imagine I'll go off the rails at xmas. Hope you continue to feel better & that some of my long story helps! xx

[Kimf85]

Hi ladies,

So we had pain then horrendous pain with clear mucous discharge then no pain and yellow discharge for two days then blood stained discharge and normal pain for two days, now we have a flood and not too much pain still loads of mucous. I'm wondering if the horrendous pain is now just my normal week before a period pain I had a coild fitted in jan and no periods after the first few days of spotting then started zolodex in April no periods no pain now the drug has gone and it's worse than it ever was before. Starting to feel the up hill climb with life coming back! Seeing gp again on Friday and gyne next week any suggestions on what to say or ask for? I have two beautiful girls and really don't want anymore children how long do you think it would take me to convince the gyne to give me a ovarian hysterectomy?.... Also how does one feel after such and op?.. Ie sex drive, joint pain, menopause symptoms etc etc xxx