endometriosis... help!

ohiknow wrote: »

I'm not under anyone. I was discharged from the gynae, told periods are painful and given a prescription for ponstan. I'm in the process of finding someone, probably private, to give me a second opinion because I can't go in like this. 3 weeks out of every month I'm sick because of this. Hopefully the diary I have been keeping will help me explain things. It's a low day, so apologies for the moan!

you're more than entitled to vent ohiknow...its obviously impacting on your quality of life and only natural to be feeling low when you're in pain on a daily basis..Its shocking that the people who are supposed to be helping us and understanding of this condition are the least helpful!

Where are you based (PM me if you dont want to say)..Just that I do know of a gynae who Ive been recommended and can pass on the info if you like?..Sorry I might have missed this but have you had formal diagnosis of endo? (Could mean that certain gynae could be more helpful than others depending of stage your at)

ohiknow, if I'm recalling correctly I think my first private gyny appointment with Dr. Orla Shiels cost €150 euro, and €100 for subsequent visits. I have been in the public system since last summer and I have yet to see the actual consultant after 3 visits so I am making a private appointment with him.

I really recommend that you make a private appointment with someone who is more gyny focused rather than obstitrition focused. You say you are in Dublin so I'm sure the other ladies could PM you some recommendations. Even if you don't have health insurance I'd still save and go for the initial appointment and bring all your medical details with you and info on everything you have tried so far. Tell them you want a diagnostic lap. done to rule things in or out.

On another note I cam across this excellent article on the goodmenproject about helping your partner deal with chronic pain: http://goodmenproject.com/featured-content/marriage-20-tips-for-men-on-supporting-a-partner-with-chronic-pain/

Hi Ladies,

Does anyone have any experience of endo affecting a smear test result? I had my first smear at the beginning of April and I have to go for a colposcopy as I have CINIII cells. I'm not worried, it's more like "Great, one more thing to add to the gyny problems list!"

Lainey89 wrote: »

Update: Went to see Dr. Hugh O' Connor in the Coombe on Tuesday. He was so nice and understanding, didn't try to fob me off with the usual stuff you get told by doctors. He completely agreed that if I am in that much pain then there is a problem despite all the other docs telling me I'm grand because the scans are clear. He suggested I have a lap where he will remove and clean up everything (I forgot to ask him about taking out my appendix while he's in there. D'oh) and he will put in a Mirena at the same time. He also suggests I take Yasminelle at the same time as the Mirena. Roll on August 25th!

thats great news lainey89-delighted you had a positive experience and felt like you were understood and listened to. Did you see him publicly or privately?

How quick will the lap be?hopefully sooner rather than later if its going to improve your pain level..I think its very possible that docs can miss subtle signs/endo unless they are more experienced with endo.

Just out of interest what is the rationale for both Mirena and yasminelle together? I'm on one of the gnrh injections at the moment but wondering about long term options too.

Lainey89 wrote: »

Thanks starlight, I tried to see him publicly but only got to see his underlings that way (one of whom told me to have a baby) so I decided to fork out the €250 to see him privately. I think there was a 2 month waiting list for that. The lap itself will be on the 25th of August, which suits me grand as it means I can go on a holiday I was invited on at the start of August.

I'm not entirely sure what the rationale is between the pill and the coil, tho he did explain that both are very low dose hormones. I'm not mad about trying the gnrh injections as I don't react terribly well to the pill, nor am I trying to conceive atm.

to be honest I wouldnt reccommend the gnrh injection without a lot of consideration and depending on individual pain levels etc. Just after my lap it was a chance to heal and although side effects are not unbearable they're not exactly pleasant either! And it stays in your system for a while too.

Ah you were right to go private, at least you got to see him directly, have also heard that it is unusual to see him when public as he seems to be very busy. Hope at least your lap will be done publicly? (Cant remember if you have private health insurance)Great that you will get to go on your holiday and I hope that it flies in and that the surgery really makes a difference for you

Lainey89 wrote: »

I have private health insurance and a medical card, which is dead handy as I have to bring the Mirena with me to the hospital. I think I only have to pay €125 for the actual lap. I have a colposcopy to do next week as well!

oh no, you poor thing...you'd think one gynae related issue is enough for anyone!

Lainey89 wrote: »

I know right?! I just hope if they need to do anything they'll do it next week and not tell me I need to come back for another appointment

will keep my fingers crossed for you that you wont need to. Let us know how you get on and good luck

If it's a major change to your normal, I would go to the GP. It will more than likely turn out to be fine, but you are best to go and get it checked out. It's also beneficial then for when you get back to the consultant, you have a history of managing the condition on file with the doctors.
Hope you feel better x

Lala, sorry to hear that you're having such a tough time of it lately. I've never had the coil myself - made a conscious decision to try to avoid any hormone-based treatments, as I felt the pill masked my symptoms for a long time. I know a lot of people have felt a lot better after getting the coil fitted so I hope you find it very beneficial!

At the moment I'm finding that the endo has flared up again and I'm just tired all the time. Any recommendations for a specialist here in Ireland? I was seeing one in London but have been home for a while now and feel like I need a check up!

Lala - hopefully the consultant can guide you in the right direction and you can get some advice on pan relief that doesn't affect the crohns.

I too avoided the coil, i just wast comfortable about the idea of something been inside like that, that's just me tho, i have read plenty of good stories about it, but it just wasn't for me.I have used the EVRA patch on/off for the last 8 years and i find it helps me. I am on nothing since around March and i was doing really well.

I started going to Physio in June with my back, the physio was saying there was nothing serious wrong just my back muscles compensate for other muscles and after weeks of exercising i'm still in the same boat and it only dawned on me last week that a factor with my back issue could be the endo flaring up. its a horrible weakness soreness that's in my lower back and goes around into my pelvis, i get it really bad for 3-5 days before my period and then it eases off. I previously suffered most my pain in my hips and tummy but since i had my son a year and a half ago i'm suffering with terrible back pain. Bar the back pain i've been doing well so i'm reluctant to go back and see my gyne as i don' want any more laps and i don't want to be put on any medication so i'm going to try soldier on with just tylex, difene and solphadine and see how i go.

Sinall wrote: »

elly123, I know what you mean about being reluctant about going back to your gynae when you prefer not to go down the medication route.

I haven't been to see a specialist since I moved back from London last year. I feel like I really need a check-up now though as it all seems to be flaring up in the last few months. Any recommendations for specialists in Ireland? South East or Dublin but would be willing to travel further afield to see someone good.

Hi Sinall,

I was under the care of Prof. Crowley in the Coombe, she was brilliant and she was my consultant for all my pregnancy appts which was amazing, i could be wrong but she may have retired sometime this year.

There is an Endometriosis association of Ireland, they may be able to guide you in the right direction as regards consultants. I went to one of their meetings about 7 years ago. I just went along to see what it was about. It was interesting and they had a consultant speaking at it i think he was based in James's Hosp at the time. Might be no harm in contacting them. xx

Oh, lala - I'm sorry to hear that it's been so painful and that you've ended up with an infection! Hope you feel better soon. Good news on the lap. Here are my tips for afterwards:

- pillows. I had to dispatch my boyfriend to buy more pillows because I needed to sleep propped up a bit
- peppermint tea. Drinking this helps to dispel the odd pains you can get in your shoulder afterwards (caused by gas used during the surgery)
- nighties. Nothing with a waist band! You'll need things that are loose around the waist for about a week
- get housework etc done before you go in and stock up on groceries so you don't have to worry about any of that when you get out

Hey Danniboo,
This might be a bit late in the day as you posted it on the 25th.

Just going by what you said;

"My periods have been a little unpredictable the last couple of months. Had a short 25 day cycle back in November which made them rather early. They're never usually late as such though I never go past 32 days and that's rare enough. I'm on 33 days now and based on an app I use roughly 5 days late."

You are using an app that appears to be based on a 28 day cycle (33 - 5 = 28) however you are having unpredictable cycles. You say "I never go past 32 days and that's rare enough." So 33 days would be over your outer limit but only by 2 days. Is 28 days too short an average cycle for you and is it causing you undue stress?

We aren't supposed to give out advice here so people can't reply with advice. I can tell you my experience, if that reassures you that might help.

I have an average cycle of about 30 days (A regular 28 day one is fairly rare). This fluctuates. When I was younger it was like clockwork... Now not so. It changed significantly when I was in my late 20s/early 30s. I have had cycles that were over 60 days.

Sometimes it feels like my period is about to start for days. I also have nausea so I go through a tonne of home pregnancy tests, even when I am not sexually active! My friend used to say "if you light a cigarette when you are waiting on a bus, it turns up!" I think this is how my period works sometimes. If I do the pregnancy test my period turns up! Maybe its because I have one less thing to worry me. I don't know if it is scientific but I know stress seems to play a part in my periods, travel, diet, over-working etc.

If you are worried about anything period related - go to your doctor. If your doctor isn't sympathetic - change doctor. Worrying on your own isn't going to help. My doctor is great. My troubles are going on for the last 5 years. Every time I go in I'm like " Ahh I'm dying!" Sometimes she allays my fears, sometimes she ups me to the consultant level but every time I come out with solid information, I know my options so together we can make the best decision about my treatment.

Posters on here are a great supportive bunch but they can't give out advice as per the forum rules. They can only show support, share experiences and send virtual hugs.

dollyk wrote: »

Is it possible to have it done private ? and does it cost thousands ?
my backround, Im 50, have be sterilized for 10 years.
Went to doc over 5 years ago with heavy bleeding, I mean I could not leave the house some days.
He put me on the pill, It seem to slow it .
But now they are back to heavy, and clots .
I went to dundalk, had my scan, and then internal scan
She said i had some fibroids and think lining of the womb.
Was on a waiting list, and thats it, keep ringing and nothing.
But its getting so bad I have to leave work every month.
Dont want to get the coil, as did not do well with the injection.
hormones and moods were all over the place .
any suggs ? thanks

I have had my myomectomy (fibriods removed) done privately here in galway. You can have any surgery done privately as long as you can pay for it or have insurance.

dollyk wrote: »

thanks. I have no insurance, so i will have to pay.
Do you have any idea how i can go about pricing this.
Did you find a lot of relief afterwards. thanks again

yes i did you will have to get a referral from your GP to a Gyne. They should be able to tell you