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endometriosis... help!

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  • Registered Users Posts: 32 ohiknow


    I know! Everytime it's bad I think I'm going to change doctors. Then it feels disloyal to my GP who is lovely but is also expensive and a man! It's just a bad run up. I have fatigue, anxiety, migraine, bad dreams, back and pelvis pain, terrible wind (I know you didn't need to know that!!) and feel light headed.

    It's great to have a forum like this because it does help to normalise how you are feeling. Sometimes I think I'm going mad!


  • Registered Users Posts: 2,827 ✭✭✭madmaggie


    I normally see a male gp, but rang a female gp, and explained I wanted a once off visit just to get a referral to the consultant. Perhaps, as I did, you could say to your usual gp that you feel more comfortable talking about this subject to another woman, my male gp was very understanding about that.


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    ohiknow wrote: »
    I know! Everytime it's bad I think I'm going to change doctors. Then it feels disloyal to my GP who is lovely but is also expensive and a man! It's just a bad run up. I have fatigue, anxiety, migraine, bad dreams, back and pelvis pain, terrible wind (I know you didn't need to know that!!) and feel light headed.

    It's great to have a forum like this because it does help to normalise how you are feeling. Sometimes I think I'm going mad!

    Don't feel like you are being disloyal to your GP! He has provided good care until now and you feel you need a female GP to get you through this issue. It's not a personal attack on him, it's a personal choice to make this easier for you.

    There's a private facebook group also, if you want to join, pm me and I'll add you. It's a great source of comfort to me x


  • Registered Users Posts: 32 ohiknow


    kellief wrote: »
    Don't feel like you are being disloyal to your GP! He has provided good care until now and you feel you need a female GP to get you through this issue. It's not a personal attack on him, it's a personal choice to make this easier for you.

    There's a private facebook group also, if you want to join, pm me and I'll add you. It's a great source of comfort to me x

    Thanks so much for that. I will pm you later.

    I know an ultrasound won't diagnose endo but has anyone gone for one privately to rule out cysts or other abnormalities?


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    Hey guys got my first period since my lap, a week late but at least it's not months. Still feeling a bit of discomfort. Would it take a while to notice a difference or does removing the endo only reduce the pain a bit?


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  • Registered Users Posts: 2,382 ✭✭✭JillyQ


    Danniboo wrote: »
    Hey guys got my first period since my lap, a week late but at least it's not months. Still feeling a bit of discomfort. Would it take a while to notice a difference or does removing the endo only reduce the pain a bit?

    I noticed the difference in the second month, but my pain was very bad, I was passing out from it


  • Registered Users Posts: 31 MzMollz


    Hi guys,

    Finally some people that know what Im going through! I am feeling a little overwhelmed at the moment, I have been suffering with my periods from the very start and after years of going to my doctor I finally convinced her to take me seriously, had a scan and PCOS was diagnosed. Was put on the pill which fought some problems but not all. Had been taking the pill for a few years but came off it in Nov as I just wasnt feeling myself (hormonal+++). Anyway things are getting worse and worse. Went back to GP who mentioned endo (as a student midwife I knew this) and had a scan done privately in march to check on ovaries. Scan showed cysts were present but not enough that should be causing problems apparently so got referred for a gynae appt, have heard this could take up to a year! As I said I am a student so cant afford to go privately but feeling lately that if somethings not done somethings going to happen! Can anyone tell me what their first consultation consisted of?


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    MzMollz wrote: »
    Hi guys,

    Finally some people that know what Im going through! I am feeling a little overwhelmed at the moment, I have been suffering with my periods from the very start and after years of going to my doctor I finally convinced her to take me seriously, had a scan and PCOS was diagnosed. Was put on the pill which fought some problems but not all. Had been taking the pill for a few years but came off it in Nov as I just wasnt feeling myself (hormonal+++). Anyway things are getting worse and worse. Went back to GP who mentioned endo (as a student midwife I knew this) and had a scan done privately in march to check on ovaries. Scan showed cysts were present but not enough that should be causing problems apparently so got referred for a gynae appt, have heard this could take up to a year! As I said I am a student so cant afford to go privately but feeling lately that if somethings not done somethings going to happen! Can anyone tell me what their first consultation consisted of?

    I'm delighted you said something to your doc, it's a good first step. Be aware that an ultrasound scan may not show up endo, it can be too small. I would recommend you keep a log of pain management and what has happened, when you go to the gynae you have a detailed history. It means that you can help her/him to help you.
    It can consist of an internal exam, depends on what the doctor feels is necessary. Focus on staying as calm! I cry every single time, emotions get the better of me!, so I always bring someone with me for back up. Hope this helps!


  • Registered Users Posts: 55 ✭✭ocli64


    I got an ultrasound privately after pushing the issue with my doctor for a while. The ultrasound showed cysts but the doctor explained that there could still be endometriosis. It was interesting that when the doctor asked what side I usually get the most pain on it was actually the side with the cysts so that gave me enough of a reason to go for a laparoscopy which showed up endometriosis as well. Got the procedure done in the Beacon by a lovely female doctor. The procedure was so quick, I ended up staying in for the night as I was in some pain but on the whole it was very hassle free and was so worth it for the change it's made to my lifestyle. I now get very few endo symptoms. I know, I'm one of the lucky ones but I'd definitely go privately about it if you can afford it.


  • Registered Users Posts: 2,827 ✭✭✭madmaggie


    I whole heartedly agree with ocli64, going private makes such a difference. I had VHI, but a woman at work was waiting in the public system for similar treatment. I was back at work and back to normal, while she waited for another 5 or 6 months, taking time off work each month.


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  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Morning all,

    Was wondering has anyone used the mirena coil as a treatment for endometriosis, i'm going for my 3rd lap next wk and my consultant wants to insert the mirena coil during it. I'm a bit concerned and very undecided as the majority of what i've read on the mirena coil has been negative.

    I'm hoping someone can share their experiences with me as i'm so lost at the minute and after years of in and out of the a&e i feel this could be my only chance at living a normal life. I'm aware all treatments effect people differently but i've no one to talk to about this and would be very greatful to anyone that could help :)


  • Registered Users Posts: 36 jennnn


    I had my laparoscopy and hysteroscopy in the Coombe yesterday. The staff were brilliant- couldn't have wished for better care. They found some endo and adhesions that need be followed up with another op. It's great to finally know it wasn't all in my head like the first GP I visited made me think.

    Just wanted to post to thank all the boardies here for their tips on the whole thing. I've quietly followed the thread but found it to be a great comfort knowing I'm not alone (and not crazy!) and full of useful advice. :)

    Thanks girls,
    Jennnn x


  • Registered Users Posts: 2,382 ✭✭✭JillyQ


    jennnn wrote: »
    I had my laparoscopy and hysteroscopy in the Coombe yesterday. The staff were brilliant- couldn't have wished for better care. They found some endo and adhesions that need be followed up with another op. It's great to finally know it wasn't all in my head like the first GP I visited made me think.

    Just wanted to post to thank all the boardies here for their tips on the whole thing. I've quietly followed the thread but found it to be a great comfort knowing I'm not alone (and not crazy!) and full of useful advice. :)

    Thanks girls,
    Jennnn x

    Jennn

    Glad your op went well yesterday, you wont know yourself with the relief.


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    Hi guys,

    I'm due back for my consultation in a couple of weeks, first once since my op.

    Just wondering what to expect, anything I should be prepared for, or questions I should ask? Starting to feel a bit nervous about it :confused:


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Hey Danni...
    Ask for a full description of what they did, where they looked, what they found, why they did what they did. It's your body, they were rooting around while you were asleep, perfectly fine to ask where they looked! :D
    I'm sure it will go well, but be calm. Ironic, considering I cry at every single gyn appointment I have!

    I'm going for my second lap in August, thesis to do in the mean time, so I've no time to be scared!


  • Registered Users Posts: 5,528 ✭✭✭ShaShaBear


    Currently waiting on my referral to a gyn since my appointment with a doctor back in March! :(
    I actually went to discuss very irregular periods, some so late they could almost be classified as missed, even though I am on Dianette. I also mentioned the crippling cramps I was getting during sex and orgasm recently. She checked me out and told me my uterus was tilted, and that it would correct itself after I become pregnant - fair enough. She then proceeded to tell me that based on family history, the cramps and period problems are most likely down to endometriosis. She did a rather frightful job of explaining it to me, since I have just turned 25, am recently engaged, and have no children. Pretty much made it sound as though my life was practically over, and that I would need an immediate referral as this would affect my fertility (my aunt, who also suffered, had a total of four miscarriages, but four healthy children also) and that surgery would offer me a very small window of opportunity to get pregnant, and that I should avail of this window if I ever want kids.

    Now, I've read up a bit on it since, which has only worked me up even more, then went for my first smear test and the results came back as a low level abnormality which was not due to a bacterial infection (doctor did a swab at the same time to check for this). I'm honestly terrified, and STILL waiting for this referral, and it makes me sick. I'm hopefully going into my third year of college now, and I don't want to miss important labs for surgery (I have never had surgery before in my life, still have my tonsils! :o ) but if this is as likely and as serious as my doctor suggested, I really want to get to the bottom of this!


  • Registered Users Posts: 1 BAF90


    Hi guys very similar problem here! It's a relief to know a lot of other women are going through the same things I am when it comes to how doctors deal with, and diagnose us women who are suffering so badly. However, it's not a relief to hear how common is it for so many of us to be dismissed and treated in such a neglectful manner that we have to resort to using force and insist we're taking seriously.

    I've been doing extensive research and from what I've read it seems surgery isn't the only answer. Endometriosis is actually caused by an imbalance of hormones in our bodies- this has been explained to me by my gyno. We have too much estrogen and not enough progesterone which is why they give us birth control pills to stop our ovulation -which is when our estrogen levels are at their highest. However, the birth control pills also have other synthetic hormones in them including estrogen that can cause a lot more problems than they solve and only provides a temporary solution to the problem. I'm not a doctor but I don't think it's any coincidence women suffering from endometriosis in my experience always seem to have the same adverse reaction to the birth control pills and the hormone treatments.

    I'm at the absolute end of my tether myself, with being treated very unfairly by a countless amount of doctors over the years I have resorted to joining an endometriosis message board http://www.endo-resolved.com/ and from what I'm reading- a lot of women have had great success not only treating- but shrinking their endometriosis using "bio-identical" progesterone cream that a lot of doctors in the states prescribe by prescription brand name (Prometrium) to restore your bodies natural balance. I have not yet given it a go myself- but since I have seen over 5 gynecologists who refuse to do anything for me but tell me this is the way it goes for some women and to deal with it- with the help of putting me on those horribly intense hormone pills and telling me to keep taking heaps of nurophen plus. I have independently decided to go out on my own and call my regular GP to schedule an appointment to get my hormone levels tested to see if I am a candidate to start using the Progesterone cream. I asked my gyno at my last appointment about it and she literally laughed in my face and told me they don't do such things in Ireland.

    Again, I am not a doctor and having not tried it myself I cannot attest in anyway that it will help you- but doctors prescribe the synthetic form of progesterone "provera" and the "deprovera shot" all the time to treat the hormone imbalance. My gyno just did! But from what I've been reading, these synthetic types aren't absorbed by the body as well as the "bio-identical" ones that occur naturally in your own body. The synthetic ones can even cause a lot of other undesired symptoms including severe mood swings and PMS (I have can attest to both of those personally) and can cause permanent damage to your bone density which is why most doctors don't recommend any woman stays on them long term (for no longer than 2 years). I know this because I myself have been put on them in the past. The "bio-identical" ones, however- supposedly don't do those things and help to stop severe PMS and other things caused by this hormone imbalance - not just the pain it causes during our periods. Again, this is only from what I've read.

    I really want to stress than I am in no way qualified to give anyone advice on what to do with their bodies and I don't in anyway condone anyone going against their doctors but I'm sharing this because I not only think it looks promising but I wish someone had told me years ago at the very least what may be causing my pain and why I may have been experiencing such an adverse reaction to the hormones the doctors had me on all this time. And I just feel there's no harm in sharing some of this with you. Maybe it will help.

    In my last visit to my gyno I was told to take "Provera" (the synthetic progesterone pill) for 60 days to see if the pain lessens. If they pain lessened because of the progesterone in the Provera, she said she would then have a much better idea that is was in fact endometriosis we were dealing with, and she would consider giving me the laparoscopy to officially diagnose it. Like I said before, If my hormone levels come back that I do in fact have a progesterone deficiency, I may choose to try the cream and see if it helps before I resort to taking the synthetic type (Provera) that was prescribed to me by my gyno. I am due to see her again in 4 months time to see how I get on with the progesterone, but after the way I was treated, dismissed, and laughed at I'm not even sure I want to go back. I don't necessarily want to put my reproductive health in the hands of gyno who has not enough professionalism to not laugh at me when I suggest something I can only assume she considers radical- yet she knows nothing about it and there are plenty of reputable doctors in other parts of the world doing it.

    Again I am not a doctor but I would maybe look into some other things if you're not getting anywhere with your current doctor. I myself am struggling with the question- what can I do if I am on the public health system and I'm not happy with the gyno I have been referred to? Do we have another choice?


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Great post BAF90. I've tried about eight different pills and the injection and hate them all. I hate taking medication, but I can take up to 15-20 tablets a day just to get through!
    If you aren't happy with your gynae, try and get referred to a specialist?


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    Second month in after the Op and i'm sitting here in tears after taking pain killers. Think the crying is more hormonal and just being so fed up from it all. I had to get my laser done earlier and the hospital rang me to see if I could go in tomorrow as they'd messed up my appointments, it was supposed to be next week, but they had me down with the wrong doctor. Then I come home and my lady friends finally arrive and still have great discomfort. Sorry for the pity party, just feeling a bit overwhelmed.


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Danniboo wrote: »
    Second month in after the Op and i'm sitting here in tears after taking pain killers. Think the crying is more hormonal and just being so fed up from it all. I had to get my laser done earlier and the hospital rang me to see if I could go in tomorrow as they'd messed up my appointments, it was supposed to be next week, but they had me down with the wrong doctor. Then I come home and my lady friends finally arrive and still have great discomfort. Sorry for the pity party, just feeling a bit overwhelmed.

    Have you given the doctors a ring? What laser? I'm sorry you aren't feeling well, it's not fun. Hope you feel better soon xx


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  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    I was up there this morning, they removed endo from underneath both my ovaries, they didn't do the biopsy as my uterus looked normal. They have given me a prescription for ponston and i've to see how I go. Feel like I didn't get much information, it wasn't even the doc that did the op I saw. I get laser treatment on my face to remove excess facial hair, due to the hormones.


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Danniboo wrote: »
    I was up there this morning, they removed endo from underneath both my ovaries, they didn't do the biopsy as my uterus looked normal. They have given me a prescription for ponston and i've to see how I go. Feel like I didn't get much information, it wasn't even the doc that did the op I saw. I get laser treatment on my face to remove excess facial hair, due to the hormones.

    At least you know they removed some endo, it could just be your body adjusting to itself after the op? I'm hoping you get relief with the Ponstan. You should ring and ask could they write it all down for you? Ah right, does that hurt?


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    kellief wrote: »
    At least you know they removed some endo, it could just be your body adjusting to itself after the op? I'm hoping you get relief with the Ponstan. You should ring and ask could they write it all down for you? Ah right, does that hurt?

    Yeah i'm hoping i'll see an improvement over the next couple of months. It's sore enough, but i'm kind of used to it at this stage, know what to expect.


  • Registered Users Posts: 2,382 ✭✭✭JillyQ


    Danniboo wrote: »
    Yeah i'm hoping i'll see an improvement over the next couple of months. It's sore enough, but i'm kind of used to it at this stage, know what to expect.

    Danni Did the find anything else while they were in there. When I had my Lap done they found Fibroids in there so far i have had four other ops to remove them and will need another one in 2014 to remove the rest. While my period pain is not to bad they are very heavy.


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    No they didn't mention anything else


  • Registered Users Posts: 2,382 ✭✭✭JillyQ


    Danniboo wrote: »
    No they didn't mention anything else

    To be honest Danni I would get onto the Gyne again and ask them what they saw there and explain you are still in pain etc.


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    I explained that to her at my appointment today, so she said that she'd put me on the ponstan for 3 months and bring me back, see how I go. They said if that doesn't work they'll try some injection that induces menopause like symptoms for a few months.


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Danniboo wrote: »
    I explained that to her at my appointment today, so she said that she'd put me on the ponstan for 3 months and bring me back, see how I go. They said if that doesn't work they'll try some injection that induces menopause like symptoms for a few months.

    Was that injection depo-provera?


  • Registered Users Posts: 1,416 ✭✭✭Danniboo


    I'm not sure she didn't give me any info, not sure if i'd let them go ahead with it, sounds a bit barbaric to me


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  • Moderators, Category Moderators, Education Moderators Posts: 27,088 CMod ✭✭✭✭spurious


    Could be Decapeptyl. It certainly stopped my fibroid-related bleeding.

    Hoping now for uterine artery embolisation to stop the fibroids once and for all.


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