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38 Posts

wissendas  ·  25 Nov 2014

For all ladies suffering from endometriosis, please go for acupuncture but also go see a qualified nutritionist who will tell you all about the foods that you are eating that make this condition worse. Diet plays a major factor. normally a coil is not inserted for young women who have not had a baby but plan on having one!


1 Posts

Endoprincess  ·  25 Nov 2014

Hi everyone,

I guess I wanted to join this discussion to voice my frustrations about the care I have received over the last 7 years in this country . I was diagnosed with endometriosis after several years of going to the GP with excruciating period pain (was told this was normal and to take ponston) , trips to A+E with bloated abdomen and sharp pains ( which nearly resulted in losing my appendix) . An endometrioma was found and then start my journey into endless appointments with unsympathetic , clinical and borderline abnoxious consultants in the gynie department in a number of hospitals. There seems to be a complete lack of understanding about endometriosis within the public sector gynie . I was told by a male consultant in Waterford that he didn't see me crawling in on my hands and knees in pain when I disputed that I needed investigation. The argument continued and he told me if I had one op it would be a revolving door of surgeries( I just think he saw a young girl, too risky for him) . He was red in the face and told me he would SLOT me in somewhere .

I returned to my GP who advised the depo injection. I had 2 shots. Six months without periods. Took me a year to feel normal after it. I ached everywhere. I put on weight . I was losing my hair in the shower.

While in London 3 years ago I was very symptomatic , and finding day to day life very hard with chronic fatigue , pain, and despair. My sister who lives in Leeds has the same  condition and got great results from key hole so I followed and had the same. We went privately. Lesions and endometroma removed . I returned to Ireland and within the year got the coil fitted. Again I was met by a consultant who I felt belittled my condition. I was a vulnerable young girl who was nervous about getting the coil. I asked questions! Is it painful? Will it damage my womb? Can I cause infection? The gynie (male) answered all my questions with sarcasm. "Yes you will be doubled over for the rest of your life" etc etc. I suppose he thought this would make me think it's not a big deal. I had severe cramps for 3 days. Let me just say the coil has been fantastic. It has definitely given me relief for 2 years. I have to say I am grateful for that. 

The last 6 months I have began getting that bloated pain where you can only walk when you bend over .Went to an appointment the day after I had a bad episode. Got a registre who was sick herself with flu. Didn't seem to have any interest me in. Student doctor present in the room.Asked me what stage endo I was. Stage 4 I replied. She made a face as if to say Jesus which really didn't help. I looked at the student embarassed. She told me I would want to be starting a family. I asked if she could so an ultrasound to see if a cyst was causing pain. She said I had a scan 8 months ago so she wouldn't. I got seriously frustrated at this stage. I argued that how could she justify not scanning me just because I had one 8 months ago. I had spent 20 minutes giving my history to a stranger like every other appointment. What did I expect to get from this appointment. Help, support , compassion? She eventually agreed to do an ultrasound . She hurried me into the next room with her student and another doctor and another student. She told me to pull down my pants to do the scan. She spoke over me, didn't involve me. Infront of 4 strangers. I felt like an inconvience. She turned to the other doctor and said "I'm having an endometriosis day". My heart sank! She brought me back in to the room. I had no cyst. I had 3 options. The coil(which I have) the depo (no way) or keyhole again. She started filling out a form for me to have surgery ! I stopped her. Do I get to think about it I asked? It will be 6 weeks out of work? Is it going to cause more damage than good? I said I would come back in 2 weeks . I walked out of the room. Saw my mother in the waiting area walked towards the door and sobbed. I explained what had happened. Of course my mother said she would go back and give her a piece of her mind. I felt like I was completely alone with this condition. No doctor understood . My mum didn't understand . My boyfriend didn't but really does support me as much as he can. Tummy rubs, words of encouragement. We talk about the future. Fertility and babies. I have such fears about it. What if we leave it too late. So not only does he have to deal with me having that fear , he has to listen to how tired I am, how sore my tummy is, my mood swings, down a lot of the time. He says if he could take endo off me so I could be better he would. My friends didn't know the extent of what I go through because I don't want to play a victim.

This condition isn't terminal. It's masked by smiles even though there's pain. There's an attitude of shut up put up. It is isolating . I feel like my body has failed me. Again I remind you I am 27. I have days I feel sorry for myself. I should feel great. I discussed this with my sister who has endo too. She has suffered like I have and has been sometimes the only real support that helps. She said once in a blue moon she will have a good day and it will dawn on her this is how other people feel all the time. This hit home with me. I think I am struggling with it for the past 10 years. I try to do my best. Try not to let it become me. Try not let it change my character. But it has. It's hard to feel confident . But I get up. I get on with it. I don't have a choice. I am a nurse who has lost all faith in the healthcare from the top in this country . 

Does anybody else feel this way? 

Also, I get bad palpitations. I wonder if this is anyway connected to endo. Sorry about the rant. 😳



10 Posts

EndoAssocIreland  ·  04 Jun 2014

Endometriosis Support Meeting at Tallaght Library11am - 12.30pm

Saturday 21st June 2014

All Welcome

Open to everyone effected by endometriosis, including family and partners, and anyone interested in learning more about it.

If you think you may have endometriosis, have been diagnosed already, need support or information, or just want to find out more about endometriosis please come along!

ní neart go cur le chéile - strength through support

See www.endometriosis.ie for more details

Please contact the Endometriosis Association of Ireland if you have any questions, or would like to know more. Text or leave a message on 086 3203855 or email info@endo.ie


10 Posts

EndoAssocIreland  ·  09 Jan 2014

Endometriosis Support Meeting

Saturday 11 January 2014 at Tallaght Library, 11am - 12.30pm

All are welcome! If you think you may have endometriosis, have been diagnosed already, need support or information or just want to find out more about endometriosis (for yourself or a loved one), please come along!

Remember you are not alone: Ní Neart go cur le Chéile - Strength through Support

Please contact the Endometriosis Association of Ireland if you have any questions. Text or leave a message on 086 3203855 or email info@endo.ie

We are a registered charity CHY8693, registered address is Carmichael House, Brunswick Street North, Dublin 7, www.endo.ie


10 Posts

EndoAssocIreland  ·  18 Sep 2013

Western Medicine and Traditional Chinese medicine are not mutually exclusive - in fact they can work very well together. However, do make sure that you choose a registered practitioner. Not sure how to find one? The Irish Register of Chinese Herbal Medicine http://irchm.com/ and the Acupuncture Council of Ireland's website http://www.acupuncturecouncilofireland.com/ will help you find a qualified, registered practitioner in your area. Your practitioner will see and treat you in person, which is very important for the individualised treatment that is required.


3 Posts

diseasefighter  ·  18 Sep 2013

How is endometriosis treated?Western doctors believes that there is no cure for adenomyosis, there are just some treatments for the pain and infertility that it causes. Common treatments are as follow: Pain medication. For some women with mild symptoms, doctors may suggest taking over-the-counter medicines for pain. These include ibuprofen (Advil and Motrin) or naproxen (Aleve). When these medicines don't help, doctors may prescribe stronger pain relievers.Hormone treatment. When pain medicine is not enough, doctors often recommend hormone medicines to treat endometriosis. Only women who do not wish to become pregnant can use these drugs. Hormone treatment is best for women with small growths who do not have bad pain. Hormones come in many forms including pills, shots, and nasal sprays. Common hormones used for endometriosis include:- Birth control pills- GnRH agonists and antagonists- Progestins- DanazolSurgery. Surgery is usually the best choice for women with severe endometriosis — many growths, a great deal of pain, or fertility problems. There are both minor and more complex surgeries that can help. Your doctor might suggest one of the following:- Laparoscopy- Laparotomy or major abdominal surgery- Hysterectomy.

more infomation about causes, complications and treatment of genital diseases, please visit this site:http://www.drleetcmclinic.com/.


10 Posts

EndoAssocIreland  ·  28 Aug 2013

The Endometriosis Association of Ireland is holding a support meeting on Saturday, 14th September 2013 at the Spa Hotel in Lucan, from 11am - 1pm.

The topic of the meeting is: “Fertility - can Traditional Chinese Medicine help?”

The guest speaker on the day will be Suzanne Cafferky, M.A.C.I. Ms Cafferky has been practicing acupuncture in Drogheda since 2002 and she is the Chairperson of the Acupuncture Council of Ireland.

There will also be plenty of opportunity to chat about endometriosis in general!

All are welcome, and there is ample free parking. For more details see www.endo.ie


10 Posts

EndoAssocIreland  ·  28 Aug 2013

Please read the article here in Irish Health "Warning on unlicensed Chinese drugs" at this link http://www.irishhealth.com/article.html?id=22520

It is not advisable to purchase any medications over the internet. Always consult your GP before commencing any treatment, and make sure that the Traditional Chinese Medicine practitioner is qualified, registered TCM practitioner. 


10 Posts

EndoAssocIreland  ·  17 Aug 2013

Endometriosis is NOT a version of endometrial hypoplasia as stated in the last post. Endometriosis is a condition where cells, like the ones found in the womb lining, are found in other locations in the body. For reliable information about endometriosis and treatments available go to websites such as www.endo.ie or endometriosis.org - and visit your doctor if you are concerned about your symptoms. 

Traditional Chinese Medicine (TCM) can complement your doctor guided treatment. There is no need to consult an "online" TCM practitioner - there are qualified and accreditted practitioners here in Ireland who will see you in person.

If you have any questions, or would like more information, please write to the Endometriosis Association of Ireland - our email is info(at)endo.ie


3 Posts

diseasefighter  ·  17 Aug 2013

Endometriosis is a version of endometrial hyperplasia or the slathering of the uterine lining. This can cause many women to not be able to become pregnant and is known for the excruciating abdominal pains and cramps that are associated with the disease. There is no known cause for endometriosis, but many medications and treatments are available for the symptoms. This normally occurs in women between the ages of 26 and 40, but has been known to affect younger and older women who have had their first or last menstrual cycle. Some women have been cured by the following steps but these steps are not guaranteed as they may not work for every woman.

  • Check with your physician about the Depo-Provera shot for women who are younger than forty. This shot has a high amount of progesterone, which many doctors are now using to treat endometriosis. This is a possible natural cure because progesterone is normally found in the male human body.

  • 2

    Discuss the effects of pregnancy on endometriosis with your doctor. Pregnancy is a possible natural cure for endometriosis. Since the disease is simply the displacement of the uterine lining, when a pregnancy occurs, the lining is naturally drawn back to the correct area to accommodate a fetus.

  • 3

    Talk to your doctor about the effects of menopause. Menopause causes the body to no longer have a menstrual cycle and it is found that many women who no longer have a cycle are less likely to have endometriosis. During menopause when there is no cycle, the uterine lining is left in place.

  • more infomation about causes, complications and treatment of genital diseases, please visit this site:http://www.drleetcmclinic.com/.


    3 Posts

    diseasefighter  ·  16 Aug 2013

    She had an abnormal bleeding in the vagina. Vaginal fluid was brwon and little. Blood volume was big and sometimes there was black block during menstrual periods. Sometimes menstruation occured twice a month. She took a test of mycoplasma in hospital and the result was positive, along with endometriosis. After taking Fuyan pill for four months, the date of mensturation was 5 days ahead and the span is a week. Since then she had no abnormal bleeding any more, and the vaginal fluid became normal. Test of mycoplasma was negative then. She kept taking pills for another 2 months and finally everything test normal.

    more infomation about causes, complications and treatment of genital diseases, please visit this site:http://www.drleetcmclinic.com/.


    10 Posts

    EndoAssocIreland  ·  22 Mar 2013

    Don't worry if you weren't able to attend the 2013 Endometriosis Information Day on 9 March, or if it was too far to travel:

    Just to let you know there will be an Endometriosis Open Educational Day this coming Saturday, 23 March 2013, in Galway. The venue is the Galway Clinic and it starts at 10am until 3pm. To register just email endometriosisireland@gmail.com, places are limited.

    Speakers include Lone Hummelshoj from the World Endometriosis Society, Mr. Mo'iad Alazzam Consultant Gynaecologist, Ms Eileen Reilly Consultant Gynaecologist, as well as from the Endometriosis Association of Ireland.

    Hope to see you there!


    10 Posts

    EndoAssocIreland  ·  22 Mar 2013

    Just to let you know there will be an Endometriosis Open Educational Day this coming Saturday, 23 March 2013, in Galway. The venue is the Galway Clinic and it starts at 10am until 3pm. To register just email endometriosisireland@gmail.com, places are limited.

    Speakers include Lone Hummelshoj from the World Endometriosis Society, Mr. Mo'iad Alazzam Consultant Gynaecologist, Ms Eileen Reilly Consultant Gynaecologist, as well as from the Endometriosis Association of Ireland.

    Hope to see you there!


    10 Posts

    EndoAssocIreland  ·  22 Feb 2012

    Hi everyone,The Endometriosis Association of Ireland is pleased to announce details of our activities for International Endometriosis Awareness Week, 5th – 11th March 2012:

    Endometriosis Information Day 2012

    Saturday 10th March, 2:00pm - 5:30pm.Lucan Spa Hotel, DublinGuest Speakers: Dr Moya McMenamin, Dr Hugh O'Connor

    Information on self-care and symptom management will be available, as well as advice from experts on diet and alternative therapies.

    The event is free and we welcome everyone to attend who is affected by endometriosis - patients, their families and partners, teachers and nurses - and anyone who wants to know more about the disease.

    Awareness Week Support Line

    Call or text 086-3203855, 6pm-7pm, Mon 5th-Fri 11th March (or contact us and we’ll call you at a time that suits you)

    For general inquiries or for further information about our Information Day, email info@endo.ie, call or text 086-3203855, follow us on facebook.com/EndoIreland, or take a look at our website www.endo.ie


    12,086 Posts

    Anonymous  ·  20 Oct 2011

    Hi there, sorry to hear about your hysterectomy. I hope you're fully recovered from what was troubling you. I know it can take a log time - month even, to recover from major surgery. You didn't mention if you had to have your ovaries removed as well. If so, you will need to supplement the hormones your body can no longer prodiuce as a result. This is vital for hormone health which will play a big part in weight managment. You don't mention your age - I presume you are middle-aged, if so bear in mind that thyroid disorders are more commmon in older ladies so it might be a god idea to have that checked out.


    2 Posts

    Fatty  ·  18 Oct 2011

    I had a hysterectomy 5 years ago and ever since I struggle to lose weight. I follow a healthy diet and walk miles per day. Would anyone have any advice for me



    14 Posts

    Asha  ·  18 Oct 2011

    Hi Daenerys

    You could try contacting the Endometriosis Association of Australia. I'm sure they will be able to help you with information about how the medical system works.

    Have a look at their website http://www.qendo.org.au/. They have a contact form on the website, and a phone number for leaving messages. 

    Will you be staying there long? Do you know someone living there? Could they contact a GP for you, either to set up an appointment or to find out what you need to do? Or perhaps they could call the Endo Association for you?

    Very best wishes for your treatment, Daenerys.

    And enjoy your trip!! I admit I'm envious Smile



    1 Posts

    Daenerys  ·  17 Oct 2011


    I have recently been diagnosed with endometriosis. I had a laparoscopy to remove a large cyst and the endo. I will now be getting injections for 6 months which im told will basically stop my ovaries from functioning and will give my menopausal symptoms.(will also be getting hrt) I will be getting the first injection in the next few days and i will have to get a second one after 3 months, but the thing is I am going to australia shortly after the first injection  and my doctor told me i will have to go about getting the second one in 3 months over there. I am not sure where to go? I dont know if I can just go to a gp for this or do i have to go to a gynae, Im not sure how much it will cost in australia and im not sure if i will have to book this well in advance. I dont know if anyone would be able to give me advice on this but if you can it would be really appreciated as it is making me quite anxious and worried. 


    14 Posts

    Asha  ·  14 Mar 2011

    Hi Pinkfangirl

    I'm not a doctor, but I just want to echo what Ally and the other poster have said. It's not at all normal to have a period that lasts for 57 days and to be in so much pain and distress. Sometimes doctors are reluctant to operate on very young people unless it's absolutely necessary. But it's definitely worth seeing another gynaecologist. Noone should have to be in so much pain. The symptoms could be endometriosis, but as the other posters said it's important to get a diagnosis. 

    You might find the information at these websites helpful:

    1. http://www.me.school.nz/this has videos and lots of information about endo and young women, if you haven't come across it already I think you (and your family) will get a lot from this.

    2. http://www.endometriosis.org/teenagers.htmlthis is a brief article from a very reliable organisation that you can print out for reference.


    22 Posts

    Cynic  ·  14 Mar 2011
    Hi Pinkfangirl,

         Your consultants are wrong to say you are too young there is no such thing as being too young to have Endometriosis. I know I had problems from the beginning & was eventually dignosed with Endo 28 yrs later. By then it was too late for me my health was completely compromised I suffer from ME/CFS/FMS, & Nickel Allergy in addition to  Endometriosis triggered infertility. These are some of the many outcomes of untreated Endo. Feel free to quote me in making your case for proper investigation of your condition.

    15 Posts

    Ally  ·  14 Mar 2011

    Hi Pinkfangirl, the last post is absolutely right, what you are going through is not "normal."  Although you are very young to undergo surgery, you really need to get this diagnosed.  Again, have your GP refer you to a gynae surgeon who will know more about the endo, procedure and treatment. 

    Take care of yourself and try to get the ball rolling for appointments as soon as possible - you never know how long you will have to wait to see someone.

    Good luck and take care.

    Ally. xx


    12,086 Posts

    Anonymous  ·  14 Mar 2011

    Pinkfangirl, whjat you are experiencing is most definitely not normal. If you have periods, you can have endo. Have your GP refer you to a differnet gyne who is experienced in Endo. If they wont test for it INSIST they test for whatever else could be the problem to rule in or out the cause.


    1 Posts

    Pinkfangirl  ·  12 Mar 2011

    Hi im 14 years old and had my period since i was 9. They have always been very long and extremley painfull. I had one for 57 days when i was 10. My GP thinks I have endometriosis but my pediatrician and gynocoligist say im too young and they wont do the test. Does anyone think I could have it if so who can I go to for the test. Any help would be appreciated. Thanks


    14 Posts

    Asha  ·  06 Mar 2011

    Hello everyoneInternational Endometriosis Awareness Week takes place next week, March 7th - 13th. The Endometriosis Association of Ireland will join patient support groups around the world to help raise awareness of the disease and provide information and support to those who have it, or think they might have, as well as their families and friends.As part of our activities during this week, we are hosting our annual Information Day on Saturday 12th March, at the Lucan Spa Hotel, Dublin, from 1.30-5pm. The event is free of charge and is open to anyone who wants to know more about endometriosis. Members and non-members, partners, family and friends are all very welcome.We will also have a support phone line operating each evening during Awareness Week, from 5pm to 7pm. For more information visit www.endo.ie


    14 Posts

    Asha  ·  13 Nov 2010

    Hi all

    The Endometriosis Association of Ireland is holding a support group meeting in the Hibernian Hotel in Mallow, Co Cork on 27th November. It's on in the afternoon, 2:30 - 4:30.

    It's free for anyone to go along, whether you're a member or not.

    There's more information on the website, www.endo.ie


    2 Posts

    Sookie  ·  06 Oct 2010

    Hi Alley,

    Thank you so much for your reply. It has given me some confidence in moving forward and finding a new gynea. I lost so much faith and confidence in hospitals.

    I have actually been considering acupuncture and definitely think i'll give it a go now.

    It's wonderful that IVF has worked for you and the very best of luck in your next round. It's so good to know that there is a support network out there and that it isn't always bad news.

    Thank you



    15 Posts

    Ally  ·  05 Oct 2010

    Hi Sookie,

    I just read your post and it is scary how sufferers of endo are just left to their own devices for years.  I too suffer from severe endo and to date have had several major surgeries including having one tube removed and six inches of bowel which resulted in me having a bag for 6th months.  Thankfully I had that procedure reversed.

    I would urge you to see a good gynae who knows about endo, being on the pill is not the solution for everyone and the injections you had I'm guessing were decaprovera or decapeptyl or something similar.  Go and see someone sooner rather than later and at least that way you can try to keep on top of it.

    As for pain relief, whatever works! I tried acupuncture and found that to be quite helpful. Also, evening primrose oil can help but it takes a couple of months to see any benefit of that. 

    I have also had three IVF cycles, last one resulted in a beautiful baby girl 10 months ago and I am about to embark on my fourth cycle next month... keeping everything crossed!  I did acupuncture through the IVF and found it really helped with the stress and pain.  I also did reflexology years ago when the endo wasn't as severe and that seemed to work well then too.  Try a few alternatives if you can, unfortunately the nature of the beast of endo is that there are so many drugs involved in trying to live a normal life; take a break from them if and when you can.

    I hope you're keeping well and the pain is bearable,

    Take care, Kea.


    2 Posts

    Sookie  ·  05 Oct 2010

    Hi I was first diagnosed as having endometriosis a little over 8 years ago. Kookie Kat i was just reading your post. I too went through several years of varying different pills without my gp being in anyway concerned about problems that i was having with them and i too eventually stopped taking them. It wasn't until i was 22 and changed my gp that i was finally sent to a gynaecologist. I.t took them another 2 years from then to decide that i actually should have a laparoscopy. This revealed i did have endometriosis and cysts on my ovaries that they believed were caused by the endo. Both my filopian tubes were blocked and one had become stuck to the side of my womb as a result. I was on a course of injections (i can't remember what they were now unfortunately) for the cysts then had surgery. They decided they could save my ovaries and tubes ad didn't remove them.

    However, as i say, this was over 8 years ago. I was given no further information on endometriosis, or the ways in which it can affect you. My periods settled down for a few years after the op but in the last year they are now getting more irregular and painful again. This is what has prompted me to see if there is more info about it and honestly had no idea how many women suffer from this condition and just how little support there really is in this country for it.

    My main concern now is should i seek advice from a gynaecologist again or are there now other treatments available that i hadn't been told about?

    It can be such a dibilitating condition that idon't want to end up in the same situation as i was several years ago.


    85 Posts

    coco  ·  24 Aug 2010

    Does anyone know has Endometriosissupportireland.com site been disbanded as I cant acess it.


    14 Posts

    Asha  ·  27 Apr 2010

    Hi folks

    The Endometriosis Association of Ireland is hosting a support group meeting in Athlone, on 8th May. Details below.

    Endometriosis Support Group

    If you would like to know more about endometriosis, or if you have been diagnosed with endometriosis and would like to meet other women who are going through experiences similar to yours, come along to the support group meeting of the Endometriosis Association of Ireland. Partners, friends and family members are also welcome.


    Location: Prince of Wales Hotel, Church Street, Athlone, Co Westmeath

    Date & Time: Saturday 8th May, 2:30pm - 5pm.


    More information is available at www.endo.ie, by email info@endo.ie, or phone 086-3203855



    4 Posts

    Janinek81  ·  20 Mar 2010

    New site in Ireland for women with Endometriosis suspected or Diagnosed


    Everyones encouraged to share their stories and/or ask a question in the guestbook section , and everyone is welcome .



    14 Posts

    Asha  ·  03 Mar 2010

    To coincide with World Endometriosis Awareness Week 2010 (8th-14th March), the Endometriosis Association of Ireland is holding an information afternoon on Saturday 13th March, and will have a support phone line open each evening (except Wednesday) during Awareness Week. Details of both are provided below.

    Endo Information DayDate & Time: Saturday 13th March 2010, 2pm - 5pmVenue: Kerdiffstown House, Johnstown, Naas (N7 exit 8, entrance just past Johnstown Garden Centre)

    The afternoon provides an opportunity for anyone who has endometriosis or who would like to know more about it to meet other women going through similar experiences. The afternoon will include talks on chronic pain management and nutritional therapy for endometriosis. Partners, friends and family members are welcome. Dr Shelagh Wright, lecturer in Psycho-oncology at DCU, will give a talk on managing the pain of endometriosis through Autogenic Training. Adrienne O'Dwyer, nutritional therapist, will speak about the management of endometriosis symptoms through diet, and will provide recipes! More information is available at www.endo.ie, by email info@endo.ie, or phone 086-3203855 ********************************* Endometriosis Support Line: 086-3203855During Endometriosis Awareness Week, Monday 8th - Sunday 14th March, a support line will be open every evening, except Wednesday, from 6pm to 8pm. At other times, please leave a voicemail message or send us a text and we will call you back at a time that suits you. Or you can send an email to info@endo.ie including your name and number, and we will give you a call. (Please note we are a voluntary support group. We are not a medical organisation and cannot give specific medical advice.)



    14 Posts

    Asha  ·  03 Mar 2010

    Hi KookieCat

    I feel so much for you!

    You are not alone in the experiences you have had. I'm involved in the Endometriosis Association of Ireland and I can't tell you the number of women who say they have been told by doctors there's nothing wrong with them, even when they're nearly unconscious with the pain and their lives are in complete upheaval because of their symptoms.

    It's not my place to give advice, but it sounds as if you really need a diagnosis! It's just not acceptable to have to live with such pain, as well as the uncertainty.

    I think doctors are sometimes reluctant to do a laparoscopy because although it's only keyhole surgery, it is surgery. So maybe they only like to do it when they're already pretty sure they know what the outcome is going to be.

    As for the symptoms of endometriosis, there is information on the website of the Endometriosis Association of Ireland, at www.endo.ie

    Other websites you might find useful arewww.endometriosis-uk.org (very clearly laid out information)www.endo-resolved.com (lots of comforting advice)www.endometriosiszone.org (includes advice on talking to your doctor)http://www.nzendo.co.nz/ (New Zealand site - I have found this site to be very user-friendly, especially the section for teenagers which gives info in a very accessible form)The Endometriosis Association of Ireland is also holding an information session on 13th March, if you're interested. I'm going to put up the details in a separate post.

    Take good care of yourself, KookieCatAll best wishes for your good health and good luck with your future diagnosis and treatment.



    2 Posts

    KookieCat  ·  08 Feb 2010

    hello all :)

    Wasn't aware that this forum was here til I saw it in the newsletter, DELIGHTED!!

    I've been suffering from period pains and PMS since I was about 15 (i'm 21 now) and i've been on various different contraceptive pills since. The first one I was on turned me into a raving bitch (please excuse the language, but it did) and then was on Yasminelle for a few years. When I started there was a bit of an improvement, which gradually diminished, so was putting three packs back to back on doc's orders and taking anti-inflammatories (mefanamic acid, or ponstin) and painkillers (solpadol, over the counter painkillers had stopped having any effect by then) for the week before I finished a pill pack (when the pain starts) right through to the week after i've started a new pill pack, which meant I was off my head for about two weeks, three when I was having a period.

    So I decided to come off solpadol and the pill for a while, not realising that it was still better than nothing! Tried the NuvaRing for a few months and thought it was ok at first, getting worse month after month. Was put on various other pills, all with the same effect; practically miraculous for the first month and going downhill and back to the usual quickly after. My GP won't give me painkillers anymore (cuz I told him I hated the effect they had on my head and they barely even dulled the pain) so I bought a tens machine online, which I'm still messing about with, and isn't very practical to carry, but I can almost get on with normal life..

    Ive seen plenty of doctors and gynocologists, and so far they're all saying the same thing- It doesn't look like i've got endo but they can't be sure without a labroscopy but they don't think its neccessary! they've done ultrasounds and found cysts on my ovaries (which I reckon could actually be causing some pain?!) but they say its normal. They're telling me there's nothing wrong with me and that all I can do is hope it passes (apparently most people grow out of period pain in their late twenties)

    Basically, the doctors Ive seen have made me feel like one of millions, telling me there's nothing wrong (making me feel like a liar, in an obscure way) and telling me that i'll either grow out of it or I'm stuck suffering for the rest of my childbearing days, and I'd like to know for sure what the symptoms of endo are, (I know I can't know for sure without a camera being inside me, but are there any close sure-fire symtoms or something?!) i'm desperate :(


    14 Posts

    Asha  ·  03 Feb 2010

    Hi folks

    The Endometriosis Association of Ireland is hosting a support group meeting in Dublin next Saturday, 6th Feb 2010.

    It's in Carmichael House, North Brunswick St, Dublin 7, 2pm - 4pm

    There's more information at the association's website, www.endo.ie

    There's also a mobile phone number you can call: 086-3203855 Or you can email them at info@endo.ie


    15 Posts

    Ally  ·  18 Jan 2010

    Lee108, when you say type 2, is that the same as stage 2?  I would advise that you find a gynae to attend for this instead of a GP. In the past I found reflexogy to help with the pain, when I was first diagnosed I did an 8 week course of it.  Following numerous other medications after that I tried acupucture and found that to be of benefit also.  I'm not sure if you are open to trying alternative medicines, but if you are trying many different medications it can't do you any harm to see if it would work for you. 

    In response to your other question regarding it getting worse, unfortunately the answer is yes, it is possible.  This is why I would urge you to find a gynae that you are happy with and who knows about endo., if they don't know much, go to someone else who does.  I found using a hot water bottle can help ease the pain and try to cut down on cheese and coffee. 

    Take care. xx  


    2 Posts

    Lee108  ·  15 Jan 2010

    im 18 and have type 2... i have been on 3 different types of contraceptive pill to try stop the pain but everytime it just got worse. finally got a lap done. was put on a new pill and am now like i was before the lap was done.. could it have gotten worse? my doctor has decided to go on a months holidays! left another doctor in charge but he really hasnt a clue. what should i do?


    4 Posts

    Dee  ·  31 Aug 2009

    Ladies, I need your help

    I've recently moved to Aramgh for work, need to find a gp here, does anyone know of anyone here to register with? Need someone who knows a lot about the condition and treatments i can try. Hope someone can help


    130 Posts

    Mel  ·  31 Aug 2009

    HI All

    Everything went well, They have to wait till i get my period to carry out the tests, They said I could start trying which is great, and they are happy enough with the scar just to use Bio – oil!! I posted a new thread about ovulation kits, the doctor suggested I try these, I was like clock work every 28 day’s, but since surgery its all over the place, my last period was 37 days ago Cry  …

    I will keep you all posted on how thing go xxx


    130 Posts

    Mel  ·  24 Aug 2009

    Hi Girls,

    Just back to work :) it takes a while :)  scar is healing very well,I Have a lot of scar tissue around the scar line, which would be great if anyone knew how to break this down ( less painful the better)  getting results on monday next to see how the op went.. x rays, etc so fingers crossed xxx

    Hope all is well xxx

    This discussion is now closed.