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Please help I'm not getting answers

I have been suffering badly for the past 6 weeks!! I am 34 with one child. 6 weeks ago I got severe pain that I thought was a UTI. I was put on antibiotics although my urine was clear doc said it might be too early to tell. Went home took antibiotics. Woke up during the night swearing and throwing up. Went to the hospital and after 5 hours waiting saw a doc who told me I had a UTI and told me to go home and finish antibiotics. I tried to explain to her that onward so sick I could not take antibiotics she didn't seem to care and sent me home very sick. I went home and got worse and worse feeling sick all the time lover pelvic pain and uncomfortable vagina feeling it's hard to explain. Got my doc to which he told me I had a virus!! Still did not get better was back in hospital a week later after suffering continuously at home. Missing over three weeks of work. They kept me In an out me in a drip o fluids and antibiotics. I still did not feel better. They had a gyno look at me and had an ultra sound she told me everything looked normal and that I had a bi I thrush. Sent home again on pain killers!! Still feeling sick and in discomfort I went bax to my doc to be told he could do no more!! I found another doctor who said would help me. He did more bloods and full sti screen. One of the bloods came back with something raised to do with my ovary. Still waiting other results. He is sending me for a trans vaginal scan to get a detailed look at the pelvic organs. I have never had any period problems or vaginal problems ever before this. I have one child. Doc mentioned endometriosis??
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136956 tn?1688675680
Yes I drink red wine... maybe too much!!!  I am reacting to it a lot differently the last couple of years so I may come off all of it as well.

I hope you get some answers soon. I can totally understand how frustrating this is for you.
Helpful - 0
Avatar universal
Hey. I'm sorry to hear that you had to give  up your sport. Life is so unfair sometimes isn't it. I am a vegetarian myself  although I should eat more veg I'm trying to change my eating habits and start to eat much healthier. I don't drink alcohol. I used to have a couple of drinks on a night out an I would be sick for days after it so I decided to give it up altogether as it was not worth how sick I got even after one! Can you drink alcohol? I also got my STI results today an they where all clear so that can all be ruled out. My go is referring me to a gyno now so hopefully I will see her ASAP
Helpful - 0
136956 tn?1688675680
Yes I have had those multiple times. They pretty much use those to rule out things like bowel disease and to see if Endo has grown into the bowel which it usually has not. At the end they will tell you nothing is wrong and that its probably just IBS. That is when you know its Endo. You could have bowel disease and Endo as well too so its good to get done regardless.

Maybe trying a different BCP might help. I used marvelon as it was a low dose one with Estrogen and Progesterone. it worked amazing for me esp my moods.

I have not heard of that brand but I have taken multiple Probiotics with no luck. I have a wheat, and cow dairy intolerance so juicing, vegan diet and low carbs have helped with bowel pain. I can eat goat cheese so I use that instead of other cheese but I do fail at that sometimes because I love cheese. gluten free is easier for me to do.

I used to be a competitive fastball player. I had to stop I just couldn't do it anymore. I can barely exercise to be quite honest. I have to really push myself and I would say the only thing that I can manage to do is pilates but I don't even do that all the time.
Helpful - 0
Avatar universal
Hi. Yes I have IBS. I am due a colonoscopy and am endoscopy in august. Have you had these? Do they help rule out or diagnose other problems! The doctor wants me to go on a BCP now. It is one that begins with an O .I can't remember full name I have prescription in my car. Do you know the one I mean. I'm wary about going on it as I know it effects your mood and stuff. I was on BCP about ten years ago and I didn't like mentally how it left me however if it helps symptoms is gladly take it . I looked up the symptoms of Adeno and it doesn't sound like what I have to be honest. Colofac is supposed to relax the spasms in the bowel. I do take a probiotic everyday called Udos 8. Have you heard of this? It is supposed to be good for your bowels etc. I am hoping or the results of more tests today. I had done without pain killers for a week bit woke up this morning with a lot of discomfort and had to take some again. The thing is with this is I can be fine for few days and it will come on me suddenly again. I'm afraid to go away or go too far from home as I don't know when the pain and sore feelings will come back on me. I was always an active person bit I'm afraid to exercise in case I make it any worse. The only thing I can manage is some short walks.
Helpful - 0
136956 tn?1688675680
No problem. I am here to help.

BCP means Birth Control Pill. :)

Endometriosis is different for everyone. Some have pain some don't. Some start getting symptoms later in life some get them right away when menses starts.

The fact that you are 34 with a child, clotting and cramps I would think it would be more Adnenomyosis rather than Endo however it could be Endo or it could be both. Adeno usually shows itself after childbirth and around 35 age year mark but it could be earlier. I can't post any links here as its the rules but I can give you some links via message you can look into for Adeno to see if you have symptoms for that.

I haven't heard of that med but it looks to be for IBS. It is some sort of probiotic? Have you been told that you have IBS? A huge amount of women that have been diagnosed with IBS actually have Endo. I am one of those. Diagnosed at 15 yrs old when in fact I had rectovaginal disease.
Helpful - 0
Avatar universal
Hey I am on colofac for my bowels,have you heard of this
Helpful - 0
Avatar universal
Hi thanks so much for all the info you are very good. I don't think they do a urine culture,they told me in the end I never had a UTI to begin with and that my urine was clear. However I requested a irine culture from my doc but I he never did one. What is BCP?  I am still waiting for sti results. The thrush swab came back clear and I thought this might come back positive!!  I'm not sure what type of blood test it was I must ask him and get back to you. He rang me today and told me to hold off on the ultra sound until he has all the results. In the end he is going to refer me to a gyno. Yes I heard about that doctor in the beacon that you mentioned. He was actually on a tv programm the other day talking about endo. His patient with him went for years of pain and being sore and was told she was just depressed and that her bloods and urine where fine. Basically you have to tell them this is not in your head this is a real pain and something is physically wrong with my body. To be honest I don't have bad periods,I do suffer from cramps and clotting but it is not a terrible pain. I do have a lot of bloating that has only started in the last year or so. The only thing she told me was that the uterus had fluid in it ,according to her this was quite normal?? To be honest I don't trust these doctors now after being sent home on pain killers without more tests and diagnosis. I have no history of gyno problems or cystitis or and problems down below before now. Could it be that I had it and iota only staring to affect me asi am getting older? Would bacterial vaginiosis show up on the swabs? I have not had full set if results only the thrush one which apparently was clear. I could deal with the pain if it was just the cramps and pelvic pain. The most uncomfortable part is the pain down below which seems to not be going away or getting better
Helpful - 0
136956 tn?1688675680
Sorry for responding so late. I didn't see your post for some reason.

Did they do a culture on your urine or just give you the antibiotics to take before hand? Some times people with endo have elevated white blood count due to inflammation and possibly a lot of white pus in the urine in which they right away think infection. That was my case for years and I have never had a urine infection. There is a disease called IC which is a painful bladder syndrome which causes a great deal of pain as well as it goes hand in hand with Endo.

Have you ever had Bacterial vaginosis or yeast infections before? Have the results come back from the STD testing?

After that is all said and done Endo will not show up on and ultrasound unless you have an endometrioma. (blood filled cyst) that is why it took 14 yrs for me to be diagnosed. I am wondering if the blood test he did was called the Ca-125 do you know?

Some doctors use that to detect Endo but it is not an accurate too because its also used to test for Adenomyosis, OVCA, adhesions, inflammation and more. Mine was elevated so I am wondering if that is what method he is basing his theory on.

Some people with Endo have no symptoms at all some they suddenly come on at a certain age and others have the pain right from their first period. It is a very complicated disease to detect and the only way to know 100% is through a lap surgery which would be minimally invasive.

It is also quite possible that you could have Adenomyosis or Pelvic congestion (huge varicose veins on the uterus/pelvic cavity) Did your uterus show up as enlarged by any chance?

I am going to message you some places you can get some further help from. There is an Endo association in ireland and they can lead you in the right direction with help and services.

The only one I know in Ireland is this guy


Mr. Mo'iad Alazzam

UPMC Beacon Endometriosis Centre,    
UPMC Beacon Hospital,
Sandyford,
Dublin 18. Ireland
T: +353 1 293 8684    

Mr. Alazzam is the surgeon most specialised in Endometriosis in Ireland. It is not yet clear, however, whether he is able to successfully treat severe rectovaginal endometriosis. Patients with complex disease may benefit from requesting a referral to a specialist in the UK or to mainland Europe.

However there are many other more experienced ones here


Prof. Dr. Philippe Koninckx

GynSurgery
Heilig Hart Ziekenhuis/Leopold I straat 45,
3000 Leuven,
Belgium
E: ***@****

Specialisation: GYN only
Bowl/urinary tract surgery: Does all of his own urinary tract work and most of his own bowel work.


Dr. Michel Canis

Polyclinique Hotel Dieu,
boulevard Leon Malfreyt,
63058 Clermont Ferrand
T: 04 73 750 155

Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work

these are some options for now if you want someone to actually listen to you. They specialize in this disease so they know what they are looking for well most regular OBGYN don't.

My suggestion would be in the meantime to try to go on a low dose BCP such as Marvelon and take it everyday continuously. See if that helps relieve some of the pain. If it does its possibly Endo but even if it doesn't  doesn't mean it is not. If you have had this disease for a while then its quite possible that the pill may not work and you would bleed continuously even while on it however it is worth a shot to try one out until you get some answers.
Helpful - 0
Avatar universal
Hi lulu thanks for your comments. I'm in Ireland and unfortunately the health care system over here isn't the best.  I'm am going to have to pay privately to her answers . I am due a trans vaginal scan tomorrow and hope this at least hives some idea of what it is. Next step is a gynacologist. You say you had it on your bowel and other places? Where you able to get this treated and did it alleviate the symptoms?
Helpful - 0
1926359 tn?1331588139
Hi there and welcome-

I am so sorry for your suffering.  Yes, there is a good chance this could be endometriosis.  You must get an endo specialist to do a laproscopic surgery- this is the only way to diagnose endo properly.  Make sure they do excision surgery and NOT cauterization as it does not remove the endo and can cause all kinds of pain, scarring, and infertility problems afterwards.  Ticked is the go to on this site for endo specialists.  She will check in and tell you the best endo surgeon in your area.
I'm really sorry you are going through this.  It took me a decade before I found the right surgeon who could help me.  I have stage 4 and it was everywhere on my bowel and bladder (this is what mimics a UTI) Sometimes patients with endo do not present with symptoms until later in life so please hold out and get the best possible care.
I wish you luck.
keep us posted...
Lu
Helpful - 0
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