Verbal endo diagnosis after 13 years

[Rosie1989]

Hi all,

My name is Rosie and I live in New Zealand anyway Ive been suffering from horrendous period pain since I was 13 no pain killer helped some codeine based ones took the edge off so I wasn't moaning on the floor in agony after being prescribed some ponstan and paracetmole the doctor told me you'll be alright but I wasn't I actually started to think It was normal for period pain to be so horrible I didnt know how other ladies handled going to work and school with this monthly demon I started buying the codeine based nurofen and take a whole card just so I could manage to hobble around. When I was 18 I went to my doctor explaining I cant handle the pain it actually feels like there a little men in there ripping up my insides also feeling like a knife up my bum and cant afford to keep buying otc pain relief they told me I was depressed and it was in my head I took there antidepressants I had terrible side effects and was still in terrible pain they put me on all sorts of other antidepressants but they did not agree with me I felt they were fobbing me off then I started getting really bad stomach pain all over which was now accompanied by diarrhea I lost my job due to having to many sick days I went to the doctor every week they then told me i had irritable bowel syndrome and to take colofac and a metamercil type drink that didnt help either I then asked if they could refer me to a gyno, no she said I asked another doctor there again no I was told. I am now 25 and have just found a doctor who is caring and has a backround in endo she prescribed me dhc continus and the coc pill far out i have never felt better after taking the dhc it doesnt relieve all the pain but i can definitley manage to walk around not like a hunch back with a hottie tied round my gut 24/7. Sex still hurts and I have these gut attacks which no amount of pain relief will cure I have been admitted to hospital a couple of times as i thought something had burst but was sent home and told they need the bed for serious patients these attacks dont happen during my period it seems to be once every 3 months it occurs I have downloaded a period calendar and noticed on ovulation day i had a minor gut attack in my right lower abdomen , my doctor suspects I have endo and cysts I am waiting on an appointment card in the mail for an internal ultrasound and will start the pill on the first day of my next period Im abit scared because my aunty has ovarian cancer and stomach cancer on my dads side of family and my mum was recently diagnosed with breast cancer shes better now after treatment. I feel like crap all the time the dhc seems to regulate my bowel issues but try not to take them often as they can become addictive Ive have been accused by people of faking my pain and being out of the social loop as most days out of the month im so tired or in pain. Does anyone else have pain 3 weeks out of the month and what is the best pain relief you have found by the way Ive tried 800mg brufen-got tight feeling in chest , 200mg ibprofen-tight feeling in chest, diclofenac sodium-upset stomach and weird vision , 50, 100, 150mg tramadol-felt sick and threw up ,300mg gabapentin-seemed to give me a tired feeling then got hyper active but no pain relief from it. codeine phosphate 30, 60mg - seems to work great but wears off after 3-4 hours , 60mg DHC continus - works great and lasts for a long time

[Impatient]

You are writing what most of us have experienced in the lengthy trial to get any medic to put all the clues together screaming ENDO !!! Took me 29 years - never give up, no matter how many times you are fobbed off. Your symptoms are typical of endo, your lengthy history is typical of endo and the struggle to be heard.

This is a uk endo forum - so I can only speak of the uk statistics. We still have a 7 year average wait for diagnosis here too. Demand is so high and the rescources in healthcare including specialists surgeons woefully inadequate.

The internal ultrasound will not necessarily pick up endo. It can spot clues to endo but won't see th disease. It will see cysts if they are looked for, it will spot other gynae conditions which may ply part in this, such as fibroids, adenomyoisis, hydro-salpinx, deformities of the shape of the uterus or other organs in the pelvis.

So a scan is a vital 1st step - even if it doesn't spot endo it can rule in or out other elements that could cause problems along side endo.

Surgery or laparoscopy is the only way to diagnose for certain and the only way to attack the endo directly too.

Every form of medication will come with side effects to some degree not least the reason you are taking them. It really is trial and error to find the one that does the best job for you with the fewest of unpleasant side effects.

I found Diclofenac really helped take the edge of my pain before surgery but made me very sleepy.I wasn't employed at the time to it was no trouble to sleep and get through the wait for the next scan or the op or whatever was coming up next, once i was on the road to surgery.

But much like so many endo ladies, I had years and years of being suspected of one thing or another regards my periods- and i did have many other medical issues along the way too. lost my job and then my house. Used to workfull time plus overtime- can now barely manage the most basic part time hours. Sadly very typical of an endo experience and it was avoidableif only someone had listened properly to me, spooted theclues and suggested endo many years before.

They didn't and I am the one living with the consequences as so many of us are forced to.

I don't have much knowledge of the NZ healthcare system - but there is NZ support for endometriosis ladies.

the website is nzendo.org.nz/ if you haven't yet come across it.

There are also forums for endo ladies in Aus and NZ and South Pacific Regions where you will findother ladies going through what you are going through while fighting to be diagnosed nd treated under the same local health services.

It won't be the same system as our NHS, so it isprobably worth checking out local support groups too. You are welcome to stay on this forum - we do have other members from assorted overseas countries -but because most of are in the UK and our experience is with the NHS or private healthcare in the UK - there will be a limit to what advice we can give you.

Different countries have different restrictions on drugs available to deal with endo too, or use different names from those used in the UK.

On the home page (click on the words Endometriosis UK on the bar under the green bar at the top of this page. On the right hand side are Polls.If you click to see them - you see one where members were asked how long it toofor them to be diagnosed. Also one poll asks how old they were when they 1st experienced endo symptoms. It's an eye opener looking at how many were forced to wait so long before finally being diagnosed and how young most are when they 1st notice they are not like other women in terms of experiences with the periods.

With the right surgery and an experienced endo surgeon you should find that they can reduce your pain levels so you are no longer relying in DHC to get through each day. It is a drug with risks of addiction so if there are days when you are not in so much pain then try and get by using a different pain killer a lower level one. Sticking to the same drug over and over is not a good idea when you are on opiate based drugs. Obviously in cases of acute pains there isn't much choice - but if you have better days or weeks than other times then do try and down grade the pain killers so you are less likely to form a dependency or addiction.

Check with your GP or pharmacists about which meds you can mix. Andof course take in to consideration any previous reactions you have had to the meds.

Don't worry on the cancer side of things - this has been going on so long if was anything sinister, you wouldn't be here -so it is certainly looking like this is going to be either endo or adenomyosis or both.

Keep on at the medics for methods to stop your periods and suitable pain relief, but mainly to get a confirmed diagnosis through surgery so you know what it is you are fighting, and with surgery they can hopefully do a great deal to make you a lot more comfy and able to reduce the meds considerably. Very best of luck in getting the treatment you do need and getting back to a normal life once again.

[dollypop1994]

Hi hun,

It sounds like you are having a terrible time of it. The "knife up your bum" feeling you describe sounds like bowel spasms- I have them & they literally put me on the floor when they happen. I have stage 4 endo & polycystic ovaries. Polycystic ovary syndrome can be diagnosed with an ultrasound but endometriosis can't. The only way endo can be diagnosed is via laparoscopy, & it sounds like you need one! It took a long time for me to get the doctors to do anything (like you I got fobbed off with irritable bowel syndrome or possible depression).

The best painkillers are codeine & paracetamol, co-dydramol (dihydrocodine & paracetamol), tramadol & oramorph. Avoid ibuprofen as this can actually irritate it. Gabapentin is actually an anti-epileptic but can be used for nerve pain, I have epilepsy & I found that gabapentin made my seizures worse.

You really need to push the doctors to give you a laparoscopy as it sounds like you're suffering in the meantime hot water bottles, baths, plenty of painkillers & Tiger Balm Red (fantastic stuff that you can use for tummy, back, & general pain) all help. If you want to talk then feel free to message me xxx

[Rosie1989 in reply to dollypop1994]

Thank you so much for replying it makes a lot of difference having someone to talk to and spport from people that truly understand I find the nz sites unhelpful there aren't any personal stories I found this site and found it so thereputic reading other ladies experiences and to realize Im not alone or being a drama queen , Ive done ongoing research and reading they all say the same thing anti inflammatories are the best but I cant handle the chest and stomach tightness of taking them, the dihydrocodeine tartrate ( dhc continus) is by far the best thing I've tried, I have 2 repeats one to pick up today yay . Oh my gosh the knife in the bum feeling is so intense and sudden I can totally relate to you its so diabillitating. I have a partner, he doesn't really understand the extent of the pain he says he has had exes with endo so I asked him what was there operation like but they had only suspected they had it no lap or other tests . 10 days before my period comes I get incredibly tender breasts to the extent it hurts to wear a decent bra or even walk as well as all over sensitive body then about 5 days before my period I get really moody and irritated the dull ache and stabby pains start up then increase as it gets closer sometimes its to the extent it makes me feel nauseous, the pain continues right through ovulation and then theres an intense stabby pain on my right side of lower abdomen aswell as dull ache inside my vagina, hopefully my appointment card comes soon for my ultrsound as my new doc thinks I have cysts aswell. Have you taken the combined oral contraceptive pill ? does it help with the pain and does it prevent it getting spreading ? I pushed myself really hard to do some light exercise ... worst thing I could have done I ended up collapsing it aggrivated the pain so much , so I get really pee'ed off when people say just go for a walk you'll feel much better obviously coming from people who don't have this condition

[dollypop1994]

Aww you sound like you are going through exactly everything that I go through (can definitely relate to the tender boobs & all the period problems too!) I find sex incredibly painful sometimes- it has triggered bowel spasms & can leave me sore for days after. (I know what you mean about your partner too- mine doesnt really understand either & he says all this stuff about he's known women with endo ect- tbh men just dont understand!) I was on the pill for 3 years (again they had to be careful because of my other problems) & it just didnt help. I have endo on my bowel, bladder, uterus, ovaries, pouch of douglas, rectum & in my general abdominal cavity & it causes other problems too (going to the loo is awful) I get bladder retention, & just a whole list of problems.

Thing is if you have to push yourself to do the exercise then that is probably your body telling you its a bad idea there are some days when I cant get out of bed as its so painful.

Like I said, anti inflamitories (non steroidals) such as ibuprofen & narproxen aren't the best thing to take- especially if you get the chest tightness as this is a sign that you may be allergic to them. I really hope your doctor does something for you it sounds as if you need to find out what is wrong. And ignore people who think you are over-reacting or tell you to go for a walk to make you feel better. Just remind yourself that they dont know how you feel, & they wouldnt like it if it was them with the problem xxxxx

[Rosie1989]

Thank you so much Dollypop1994 for taking the time and effort to reply to my post and share your knowledge with me , I'm so greatful

Oh gosh thats horrendous you poor thing its so frustrating being like this and feeling like utter crap for long amounts of time.

I just had a phone call from the nurse at my docor's clinic saying Iv'e been declined by the public hospital as they consider me non urgent and also because there are no physcial signs (can't feel mass on my stomach) by touching it on the outside I was totally gutted, then she said my doc has put in for a referral for a gyno person to do it and if that fails I would need to pay for it and go private this infuriated me as I said to her I can't work due to this intense ongoing pain, constant fatigue and constant diarrhea and have no money behind me. It really felt like a kick in the teeth but I'll keep positive and hope that this gyno referral will do this internal ultrasound and get some sort of solid diagnosis.

I have just started the coc pill yesterday I got abit confused I thought you took it on the first day of your period but you take it for suspected endo as soon as you get it. I had some lower abdomen pain and some stabby feeelings had to take some dhc's which have taken away the majority of the pain.

I remember being prescribed some clonazepam (klonopin) years ago they seemed to relax my whole body but as they are a benzodiapene they are very strict on prescribing them over here, a friend of mine gets them for epilepsy he is very kind and gives me the occasional one from time to time to relax things, have you tried anything like that?

xox