endometriosis... help!

nak

Recovery time depends on what the surgeon does during the procedure. Took a week off work after my last lap as they didn't do much treatment wise. My abdomen was swollen for around 3 weeks.

JillyQ

GaGa21 wrote: »

Hi all,
My first post on this thread. Have had heavy and painful periods most of my life. Had my first D&C aged 14 and was on the pill for 10 years. Came off it to give my body a break. Periods were regular, painful but manageable apart from a few episodes. Usually admitted to hospital, diagnosed with a cyst and sent on my merry way. Was on Ponston for pain for a year in 2014 and this year has been the worst of my life painwise. Periods were so painful i was passing out and vomiting every month!
I went to a doctor in January and insisted on a referral to a Gyne. He sent a letter to the Coombe and I've been waiting all year. Finally after another admittance by ambulance to a&e in pain, where another cyst was diagnosed, my appointment at the Coombe was brought forward.
I was seen last week by one of the Dr's team, where a history and pelvic exam were done. Have a laparoscopy set for next month for possible endo.
Am nervous of the op. Anyone have advice on recovery time, possible outcomes? As i am in late 30's, married and semi-trying for pregnancy, i am also wondering about fertility issues too.
Sorry for rambling, just don't know what to be thinking. Any advice welcome.

Have had a couple of laps done. First one was in for the night, second one was in & out in day. Took a couple of days off work. Tummy was tender for a week or so afterwards.

princess-lala

I saw Hugh O Connors team Tuesday in James's, the plan for now is to start Esmya immediately- they gave me the wrong prescription :mad: for three months, then back onto decapeptyl for three more months then surgery.

Has anyone tried Esmya?

Ms. Koi

princess-lala wrote: »

I saw Hugh O Connors team Tuesday in James's, the plan for now is to start Esmya immediately- they gave me the wrong prescription :mad: for three months, then back onto decapeptyl for three more months then surgery.

Has anyone tried Esmya?

Never even heard of it!
Do you mean that they gave you a prescription, you took it for x months and then went back today to find out it was the wrong thing??? Jaysus!

How are you feeling about it? I'm under Hugh O'Connor too, I'm not sure what the long term plan is as they are mostly trying to figure out what the pain I'm in is being caused by!

princess-lala

Noooo they gave me the right prescription but on the wrong page. It's supposed to go on a "hi-tech" prescription but they gave it to me on a normal prescription.

Only started taking it Tuesday.

How long have you been seeing Hugh?

Ms. Koi

How did they manage that?
I'm only with him three months, back in January!

princess-lala

Ms. Koi wrote: »

How did they manage that?
I'm only with him three months, back in January!

God only knows! The secretary said they're always at it

joeprivate

Not sure if this is any help but I thought it was worth a read

https://www.drmcdougall.com/health/education/health-science/stars/stars-written/paula/

Endometriosis is one of the most common gynecological problems affecting an estimated 5.5 million women in North America, but this condition may occur at a subclinical level in half of all women following the Western diet, as discovered by autopsy.1 This disease occurs when the endometrial tissues lining the inside of the uterus spread outside of the uterus and become attached to the ovaries, fallopian tubes, the bowels and other internal abdominal parts. This misplaced endometrium responds to the menstrual cycle in the same way as the original tissues of the uterine lining: each month the tissues build up, then break down, and shed. In the abdominal cavity the internal bleeding results in inflammation, causing pain, infertility, scar tissue formation, adhesions, and bowel problems.

Every scientist and doctor agrees that the cause and course of endometriosis involves female reproductive hormones. However, few of these experts know about the connection between hormones, endometriosis, and diet—but they should. Studies of populations of women show the risk of developing endometriosis is much higher with the consumption of red meat and beef, and much lower with consumption of vegetables and fruits.2 A similar dietary connection is found with other diseases of the female reproductive organs, including uterine fibroids, ovarian cysts, and cancers of the uterus (endometrium) and ovary.2-6

The rich Western diet changes female hormones and as a result causes the development of disease in tissues that are hormone dependent—those of the uterus, ovary, vagina, and breast. Environmental chemicals, lack of dietary fiber, excess dietary fat, estrogens in cow’s milk, lack of plant-derived phytoestrogens, and resulting obesity are some of the means by which diet adversely affects hormones.6-10 Most importantly, when a woman changes to a low-fat, plant-food based diet her reproductive hormones correct and most troublesome female problems, like heavy menstrual bleeding, fibrocystic breast disease, and PMS are alleviated. Her risk of future health problems such as breast and uterine cancer are also greatly reduced.

Too little research has been done on fertility and diet but, what is known is that a low-fat diet and/or weight loss will improve the function of the ovaries and reproductive qualities of a woman.

GaGa21

GaGa21 wrote:

Hi all, My first post on this thread. Have had heavy and painful periods most of my life. Had my first D&C aged 14 and was on the pill for 10 years. Came off it to give my body a break. Periods were regular, painful but manageable apart from a few episodes. Usually admitted to hospital, diagnosed with a cyst and sent on my merry way. Was on Ponston for pain for a year in 2014 and this year has been the worst of my life painwise. Periods were so painful i was passing out and vomiting every month! I went to a doctor in January and insisted on a referral to a Gyne. He sent a letter to the Coombe and I've been waiting all year. Finally after another admittance by ambulance to a&e in pain, where another cyst was diagnosed, my appointment at the Coombe was brought forward. I was seen last week by one of the Dr's team, where a history and pelvic exam were done. Have a laparoscopy set for next month for possible endo. Am nervous of the op. Anyone have advice on recovery time, possible outcomes? As i am in late 30's, married and semi-trying for pregnancy, i am also wondering about fertility issues too. Sorry for rambling, just don't know what to be thinking. Any advice welcome.

Just an update guys.....had my lap done. Was kept in overnight as anaesthetic didn't seem to agree with me. Sent home but ended back in hospital 2 days later with an infection in one of the incisions! Was on iv antibiotics for 6 days, let home and on oral antibiotics for 5 more days. Just unlucky but I'm just glad it wasn't MRSA. Have to say the pain in my body from the gas was unbearable.
Anyway, I was diagnosed with stage 4 endometriosis. It's attached to my bowel and need to have an MRI in few weeks to see how deep it is before decisions are made on treatment. Been put on the pill till then to calm it down. One of my fallopian tubes also failed the dye test. So needless to say I was a bit upset by it all, but the infection distracted me from the diagnosis to be honest. Am totally wiped out from the antibiotics and just need to build my body up again before it all starts again. Anyone here diagnosed stage 4?

Danniboo

Hi guys,

I really need some advice as I feel like i'm at the end of tether. I'll try keep it brief. Was doing well for about a year and half with the endo/PCOS. Then periods went a bit off, gained weight, became a bit depressed. This is a time when I was away travelling and should have been having the time of my life, I went back and forward to the docs, test after test after test, I was put on anti-ds for my moods, they seem to think I have PMDD and then had an ultrasound. This revealed multiple cysts had developed on both ovaries. I was put on metformin. I then had another laparoscopy which revealed more endo had developed on my pelvic wall. This was removed and I was put on the pill. So it's about four months since my lap, my periods are a bit out. I've developed muscle twitching where my legs flinch, not sure if this is a side effect of the medication or completely unrelated. My moods are so up and down and i'm at the stage where I don't know if the cure is worse than the cause. I stayed away from the pill for so long because it wreaks havoc with my mood. I went back to the doc recently and they've lessened my dose of anti-ds to see if this is a cause of the leg twitches. My moods are so flat some days, i'm irritable, then some times i'm okay. I was pretty nauseous for over a week when they changed my dose and my appetite wasn't great, could only face basic foods. I've been having pains that are similar to wind pains but in my lower pelvis too. I'm sick of feeling like my moods are completely out of whack and whether these aches and pains are endo related or to do with the meds. I'm feeling a bit lost with the whole thing, and hoping someone can offer some advice. Thanks xx

JessicaV123

Hi everybody
I'm really at my wits end and I need some advice or information regarding endometriosis that is first hand and not just from a website.
I'm 21 years of age and I've had bad periods all my life. I never really realised they were bad periods until September when everything went downhill and I spoke to some friends about theres. In September it was like things took a drastic turn for the worst. I woke up one morning with a period that made me pass out with pain. I ended up spending 4 days in bed with pains down to me knees unable to move with trips to the toilet in between to either vomit or use the toilet because of violent diarrhoea. After my period left it all of a sudden began to hurt to urinate. Thinking I had a simple urinary tract infection I went to the doctor who said my urine was fine but gave me an antibiotic anyway 'to be on the safe side' after the course of the antibiotic was finished and I had no luck I went back and they said they didn't know. At this point I decided to try a different doctor and so they ended up giving me another antibiotic for a urinary tract and an antibiotic for thrush. I had neither and once again my urine was clean so once again the antibiotics didn't work. At this point I started to get severe menstrual feeling pain two weeks before my period was due and I was bed bound again. My period was a few days late but my cycle has never been the most precise and I thought my period would get rid of it and it was just a glitch in my system because the doctor couldn't find anything. I was wrong. The period was the same as the month before except I had very large clots as well. I've always had clots but nothing on the scale of these. I didn't go back to the doctor even though it continued to hurt to urinate and I was getting period type pains throughout the month without my period because I felt like it was in my head because the doctor couldn't find anything wrong. Then one night out of nowhere the pain got ridiculously bad and I kept feeling like I was going to faint. I panicked and got a taxi straight to the A and E in Galway because I had just recently moved away from home to do a masters and I live alone but my family is on the opposite side of the country. I landed in A and E unable to stand and in an incredible amount of pain at about 1am. I was triaged and hour later and given an ibuprofen which felt like taking a smartie. When it reached 9am after sitting in the waiting room all night I banged on the nurses door in tears and she told me it wouldn't be long now. When I went in the doctors did my bloods and a urine sample which they said were clean (as I suspected they would be) and I was left still in an extreme lot of pain on a seat in the corridor until 2pm. Then a doctor came up and announced in the middle of the corridor that I had an STI. With that I started crying again (sheer exhaustion) and tried to explain that it was not humanly possible for me to have an STI unless everything I learned about them had been wrong. Then he accused my boyfriend of cheating. I was discharged at 3pm in pain to go and get swabs done with my GP. Went to the GP the next day and she didn't listen either ... told me my urine was clean (again) and did the swabs. She prescribed me an antibiotic which would clear up chlamydia for two weeks and told me to continue to take it unless I got a phone call. I never got a phone call but after nothing had changed a week and half later I rang the surgery to ask should I be feeling better. They said they would ring me back and didn't. So I booked another appointment to see the doctor. She said the results had come back clear for STIs (there was no way they wouldn't) and prescribed me ponstin to help with the pain. The ponstin didn't do much and at this point I started to develop severe constipation followed by diarrhoea and then constipation again on a continuous cycle. After blood started appear in this cycle I decided to go home to my family doctor because I was getting very worried about what could be wrong. Family doctor did the urine test (clean) and bloods. I paid to go private and get an ultrasound done and I was diagnosed with polycystic ovaries. The person who did the scan mentioned the possibility of endometriosis and wrote that in the report. Fast forward to January where my diarrhoea constipation cycle turned to just constipation and I tried using senakot. After 8 and a half days I had to use an enema and I have needed to use senakot every few days since. My periods are still unbearable but completely all over the place now (last one lasted 9 days) and didn't come for 37. I ended up having to travel home from college last week after getting an actual urinary tract but as it turned out I'd had it for about 3 weeks without realising until i developed a fever and the shakes and I was vomitting. I didn't realise because it always feels that way to urinate now. Family doc is apprehensive about putting me on the pill. Second A and E visit happened on Tuesday after unbearable pain again. The doctor in A and E gave out to me saying it wasn't an emergency and told me my urine was clear and so were my bloods. She told me it's all because of constipation and even though I said that didn't arrive until November it didn't make a difference. She blamed it on the masters. I was prescribed another antibiotic for a urinary tract even though my urine was 'crystal clear' and I was given movicol for constipation and told to stick with it and it will get better (it hasn't worked yet). My GP referred me to a Gynaecologist for possible endometriosis but I have no health insurance and the waiting list is around 6 months long. Does this sound like endometriosis ? And what can I do to be taken seriously? It's taken over my whole life. I've missed so much college that it's become impossible to keep up especially in pain. I've hit a point where I'm contemplating dropping out. Im struggling to sleep because I'm petrified of what is going on inside of me that nobody seems to be too interested in helping me find out. And I'm petrified that it will ruin my chances of having children someday. I really hope it isn't endometriosis because I have read some stories after it was mentioned and I feel awful for the life that it's sufferers have to live. But is it possible that it is? At this point I just really need to know what is going on. Thanks for your help in advance and I'm sorry all of that was so long winded.

GaGa21

You poor thing! So sad to read your story and hear that no medical professional is prepared to help you. It definitely sounds to me like you have endometriosis. Unfortunately in Ireland it takes years to get an official diagnosis as doctors seem to be so dismissive. They think it's all in your head, you have a low pain threshold or are attention seeking.
I had similiar symptoms to you for years but got great relief from the pill from a young age to my 30s.
But then my pain increased to the level of passing out and vomiting.
I went to a different GP and demanded a referral to a Gyne to find the source of the problem and not just prescribe pain relief. I had a laparoscopy and was diagnosed with stage 4 endo attached to the bowel. I will need surgery to remove. Considering your bowel issues, I would guess u have some bowel endo too but this can only be diagnosed via laparoscopy. Check out The Endometriosis Association of Ireland. They have a secret facebook page aswell where you can get loads of info and talk to other women in your position.
Also demand your GP refer you for a laparoscopy, or find a GP that will. or go private if you can afford to. You can pm me for any info u need x

GaGa21

You poor thing! So sad to read your story and hear that no medical professional is prepared to help you. It definitely sounds to me like you have endometriosis. Unfortunately in Ireland it takes years to get an official diagnosis as doctors seem to be so dismissive. They think it's all in your head, you have a low pain threshold or are attention seeking.
I had similiar symptoms to you for years but got great relief from the pill from a young age to my 30s.
But then my pain increased to the level of passing out and vomiting.
I went to a different GP and demanded a referral to a Gyne to find the source of the problem and not just prescribe pain relief. I had a laparoscopy and was diagnosed with stage 4 endo attached to the bowel. I will need surgery to remove. Considering your bowel issues, I would guess u have some bowel endo too but this can only be diagnosed via laparoscopy. Check out The Endometriosis Association of Ireland. They have a secret facebook page aswell where you can get loads of info and talk to other women in your position.
Also demand your GP refer you for a laparoscopy, or find a GP that will. or go private if you can afford to. You can pm me for any info u need x

new resident

God that is just awful to read! I've spent the last two hours reading this forum and thanking God I don't suffer as much as other people.

I am yet to be diagnosed and am awaiting a lap with Hugh O'Connor. I have suffered with painful heaby periods all my life. Since the age of ten. It interferes with my sleep, my mood and the pain is severe. It can be dulled with pain killers but the problem is I take too many in the first twenty four hours if my cycle. But after reading this I'm clearly one of the lucky ones as I'm not in pain all the time and the pill or patch reduces my symptoms a lot . I'm now wondering if I have it at all....Like many women I pushed my GP for a referral even though she was the first one to bring up endo. I didn't even know what it was. I went to her because I was afraid I'd od on painkillers or become addicted. I've recently been for a colonoscopy as I noticed blood in my stool during my cycle. The consultant was so dismissive of endo and said it's rare. He keeps talking about IBS. I have no problems with food or pain any other time of the month. My mum suffered her whole life. She was passing out, in pain three weeks out of the month and was told to have a hysterectomy from a teenager . The only thing that helped her was a marina coil and being pregnant.

The reason I'm pushing for it is because I'm getting married in a few months and would like a baby. I'm 32. I'd rather find out now if I do. Has anyone been diagnosed with endo and it's just painful during their cycle? I'm afraid if going through the OP and being told it's just painful periods and get on with it. But then I won't have endo and perhaps fertility problems so I don't know how I feel!!!!

GaGa21

new resident wrote:

Has anyone been diagnosed with endo and it's just painful during their cycle? I'm afraid if going through the OP and being told it's just painful periods and get on with it. But then I won't have endo and perhaps fertility problems so I don't know how I feel!!!!

Yes, I normally just have pain first 24hrs of my menstrual cycle and lap showed stage 4 of disease plus ovarian cyst and a blocked fallopian tube! So best to find out sooner rather than later. Pain is different for every woman.

new resident

GaGa21 wrote: »

Yes, I normally just have pain first 24hrs of my menstrual cycle and lap showed stage 4 of disease plus ovarian cyst and a blocked fallopian tube! So best to find out sooner rather than later. Pain is different for every woman.

Thank you for your reply. That makes me feel better about about pursuing it because the doctors are making me feel like it's all in my head. I've to pay 125 euro tomorrow to listen to a bowel specialist tell me that I probably have IBS because my colonoscopy was clear and give me a diet plan. I've never had a problem with food and I eat very healthily 90% of the time. My weight , diet,bowel movements are completely normal and all my symptoms point to endo but he, along with my GP dismisses it because I've had a colonoscopy and an ultrasound.

Can anyone tell me how to get onto the secret endometrios society of Ireland secret page?

Thanks

GaGa21

new resident wrote:

Can anyone tell me how to get onto the secret endometrios society of Ireland secret page?

Like the page on Facebook and send a request to join the secret page via the admins. They will add you.

Any material relating to endo will show it can be only diagnosed via laparoscopy. Print it and show to your GP and consultant so they are aware it is not "in your head"!

JillyQ

new resident wrote:

Thank you for your reply. That makes me feel better about about pursuing it because the doctors are making me feel like it's all in my head. I've to pay 125 euro tomorrow to listen to a bowel specialist tell me that I probably have IBS because my colonoscopy was clear and give me a diet plan. I've never had a problem with food and I eat very healthily 90% of the time. My weight , diet,bowel movements are completely normal and all my symptoms point to endo but he, along with my GP dismisses it because I've had a colonoscopy and an ultrasound.

new resident wrote:

Thank you for your reply. That makes me feel better about about pursuing it because the doctors are making me feel like it's all in my head. I've to pay 125 euro tomorrow to listen to a bowel specialist tell me that I probably have IBS because my colonoscopy was clear and give me a diet plan. I've never had a problem with food and I eat very healthily 90% of the time. My weight , diet,bowel movements are completely normal and all my symptoms point to endo but he, along with my GP dismisses it because I've had a colonoscopy and an ultrasound.

Hi I feel so sorry for you going through this. I have gone through this hell on and off for 30 years. I have just had my 6th major surgery 5 myomectomics and finally a hysterectomy I also had 3 labs. What I will say is demand that your GP sends you to gynecologist. If your current GP is unwilling to change your gp and find one who is.