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endometriosis... help!
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faw1tytowers wrote: »|Kneeling on all fours and rocking a but like giving birth thats how I do it too. And sometimes I find it feels like giving birth in particular the placenta stage!
I have never given birth, so have no idea what thats like. But sometimes when I am in pain to hear me breath you would think I was in labour. I breath like you see pregnant women being told to when they are in the midst of a painful contraction!
I must look out some of them cold compress thingys and perhaps try the kneeling on the floor thing - although not when the dog is there or she will think I have gotten down there to play with her!!!
So glad to hear that people completely understand the pain I am going through. My mother and friends try to, they really do, but they don't. How could they. And at times they get incredibly tetchy with me. At times it even feels like my mother hates me - she doesn't obv, and was quite upset when I told her this. But I had to tell her, the way she speaks to me and treats me at times, like I am not so much putting the pain on, but exaggerating it to get out of doing stuff. And then also it can hit at ANY time and totally disrupt my life and the lives of anyone I am with at the time!
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My boyfriend came across this thread and told me to have a look. Its the first ive heard of the conference but will definetly attend as i think it will be very informative.
I was first diagnosed with endometriosis in 2001 at the age of 14, prior to that i had been attending a gyn since 1999 i first went to my own gp who referred me on straight away, i got my periods in 1998 and by early 1999 i was constantly bleeding and in absolute agony, i had scans and a d&c which gave no indication of what the problem was so i was put on the pill along with a steroid tablet to ease the pain, like others i would be doubled up in pain wouldn’t be able to walk and had to give up swimming competitively and playing sport for a few years, nothing eased the pain, i was collapsing and missed an awful lot of school. My gyn decided that in Jan 2001 she tried everything to ease my pain but the only option was a laparoscopy, so i had this done and they diagnosed endometriosis and explained what it was, they said the reason it took 3 years to diagnose was that i was very young to have it. so in 2001 they cleared what they could and for the next 3 years i was taking difene, with tylex and still bleeding very heavily for two-three weeks every month and in agony, ive never experienced pain like it, before my second laparoscopy i was put on an injection once every 3months for 6 months, this was like a menopause injection which basically put me through menopause, i was about 16 and in 5th year in school, my hormones were all over the place i was getting hot flushes, i was so moody and no one understood why and basically taught i was a troubled teenager and that i needed to snap out of the phase i was in, it was awful. I had my second op in June 2004, 5 days after i finished my leaving cert, again they cleared what was there, this time it was quite successful, i was taking painkillers when needed but my situation started to improve, i wasnt bleeding for as long and the pain wasnt as severe as before, i was put on the evra patch (which is a transdermal contraception patch). With the last op to clear the endo and this patch i rarely suffered, i was discharged from the gyn and the hosp in Oct 2006 and didn’t suffer (bar the normal period pain) again until April 2010 when i start to get really bad pains in my back and around my hips and heavy painful periods which i hadn’t experienced since 2004. I went to my doc and told him i taught it may be the endo coming back so without hesitation he referred me to my gyn again, it took 6months for the appt but i got there eventually. i explained my symptoms and without any delay my gyn said she would carry out another op to see if the endo had come back. I had my 3rd op in Jan of this year, it had grown back and they cleared what was there. I was sore for a few days but was back running around training exactly two weeks after the surgery.
After the surgery my own gyn was on call so a different guy came around to discuss what they had done and what they found, as ive done a lot of reading up on endometriosis he didn’t have to explain much but what he did say was that if i was planning on having a baby i should go back and have the procedure done again to improve my chances, i was back with my gyn for a follow up appt on Monday and i told her what the other doctor had said, she was very shocked, she said there is no way they would carry out the procedure before i start trying as its too invasive and that if i was trying for 6-12 months without success they would then look at my ovaries and tubes before considering doing another op, she said that my tubes and ovaries where clear and that she couldn’t see there been too much of a problem with me conceiving, i was delighted to hear that as for the last 10 years all ive ever heard is that it can be very difficult to conceive and that i would more than likely have problems. So it was nice to hear some positive feedback (obv i won’t know until i do start trying) and i don’t plan on trying for a baby for another 2-3 years but it made me feel more positive. She also informed me that pregnancy can be a cure for endometriosis
I have read through all of your posts and i can relate to all of you, ive been there and understand what your going through no one will understand unless they have suffered what we have, for the women that have not been referred demand a referral from your gp its your right.
I cant understand how your gp can say there is no way you could have endometriosis as your not ovulating, you ovulated when you first got your periods so there for you could have it since then without suffering and only suffer later on.
I really hope you guys get sorted and can get on with your lives sooner rather than later.0 -
elly123 thanks for your input. LIke you I was told i was too young to have it at the age of 13 and simply put on the pill. The pill they gave wasnt great and I didnt feel much difference until many years later and a new doc changed my pill. I had wondered if I would be pain free after my first son. In fact I think maybe I was.... I didnt bleed for almost a year after as I was breast feeding. But with my second son I bled heavily after the birth for weeks and my periods since have been worse than ever with pain and the amount of bleeding. I am dreading it coming this week.... but suprised that I have no PMT yet :S
The doc put me on a tablet to stop me bleeding so much last month in gyn and have an appointment inthe clinic next month which from what I understand will lead to key hole within the month.
Like you I missed sooo much school and was hormonal. I had my first period about age 9.
Lovely to talk to people who know what we mean and feel. 0 -
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Hello ladies,
I am a long time sufferer of Endo and it has recently come to a head following a laparoscopy last Friday.
Here's a brief history.........
Always had heavy and painful periods. Married in 2001 and started ttc in 2002. Got pregnant quickly but sadly m/c at 6 weeks. Had a d&c and no mention of endo. The same thing happened in 2004 - m/c at 6 weeks again, d&c again and no mention of endo.
Gynae put me on clomid for 6 months and that made me worse than ever!
Started with Napro in 2005 and had a lap in March 2006. He told me I had endo but nothing major!!! No luck with drugs (hormone levels were not improving) or ttc in a year so had another lap in Feb07 with a different surgeon. Woke up to be told I had severe endo and had to go back in May 2007 for a laparotomy. Major surgery but 6 months after that we (with Napro) found the drug that worked for me and 5 month ttc I was pregnant and had my little boy in April 09!
So now, we are back on the ttc road trying for number 2. This resulted in being referred back to my wonderful surgeon and had a lap last Friday. My endo is worse than ever and my entire right side is destroyed. He wants me to come back again for another laparotomy and removal of my right ovary.
I trust him completely - he got my little boy here, but I'm a bit daunted by the whole thing.
Endo is genetic and my sister has had similar problems. She lost a tube but has managed to have a little girl through IVF. She is now also trying again and is about to embark on another bout of IVF.
I also started on Cyclokapron and Ponstan Forte a few years ago to help with my periods and I must say they changed my life. My periods are much more manageable these days. On the subject of diet and nutrition - I have been told to stay off dairy and increase intake of Vit D 3 and Omega 3 Fish Oils. My sister was told the same. Diet really makes a difference. (I didn't stick to it after I had my little boy and this is why my endo has come back so aggresively!)
Anyway, it's good to know there are others out there with similar problems and through this thread we can support each other.0 -
Everything I read here is a comfort! I started having periods at 11 and started to spot during the month and was in absolute agony. Doctors told me I was just being silly and my mum who had always had immense pain with her endo fainting, and being in bed for two weeks etc just thought that my being in bed for 5 days or so and pain because it was less than hers was normal. Funnily though we were talking the other day and she reminded me sometimes in the week before my period and right when I hit puberty before they even started they brought me to hospital and had emergency call outs at night to the house because I was screaming and rolling around crying. Doctors always said it's a rumbling appendix, but then point out themselves it would be on the wrong side or some such, shrug give me a pain shot and send me home or leave. This went on till I was about 15 and decided to go onto the pill.
My OH is getting frantic for me to see the gyn at this point. I don't know if I mentioned but due to problems with hormones I came off the pill 18 months ago and since then every month things have steadily gotten worse and worse. Now I'm at the point where I have pain for a week and a half before and then on the week of it during the day I can walk around but slowly, look like a ghost and have trouble sitting which is the only reason I am walking around. At night I'm in a ball screaming into a pillow. And due to allergies I can only take smarties oh I mean paracetamol
. I feel so bad for him cause he just wants to help and fix me. I am really lucky in comparison to some people like my mum. I have never fainted.
I should see my gyn at the end of may. I got blood test results and the gp freaked me out by going through all the positive results on blood sugars etc and then stopping before all the hormones, asking me where I was in my cycle twice and then after hmmmm-ing saying ehhh a few times goes "So when are you going to the gyn?" When I tell her in a little over a month she replies "Well you know I would really prefer for the gyn to interpret these results I just don't feel comfortable giving you these." After that she closed up and wouldn't tell me anything. How to freak a woman out or what?!
faw1tytowers: My bm are a huge part of how I got started on the diagnosis track. The specialist feels that chocolate cysts are most likely present on the outside and that as my hormones ramp up they cause bleeding in and out of that area.0 -
hi all. Just found this thread, it's nice to read people stories.
I've just yesterday had an appointment with my college GP (seriously lovely woman!) who I have been going to on and off for 2 years about stomach issues. I've always had bad stomach problems, since about 12 (I'm 28 now) where it would literally feel like someone was stabbing me repeatedly. My family GP diagnosed me with gastroenetristis and then ulcers. All through school I woul have to go to bed for 2 days or so (luckily i was boarding so that wasn't an issue during the day!!) of my period, really heavy. My Mum had really heavy periods too, so I kind of didn't think anything of it.
I've tried wheat free and dairy free diets, but while they helped a little, they didn't stop the random pain that just leaves me doubled over and all sweaty and clammy. Went to the doc about feeling tired and my stomach issues. Bloods came back as me having severe anaemia, and went and had a colonoscopy and endoscopy, both came back totally clear. So we were no clearer to finding out what was going on, but I just stopped going to the doc, because i was beginning to feel silly just going in going "emmm... i have bad pain". (Not that the Doc made me feel like that, at all. She's really really lovely)
I actually never put 2 and 2 together until I got a period tracker app about a year ago and started inputting symptoms. All of a sudden I was seeing a real obvious pattern of major pain around my ovulation days, all through my period, and blood coming out of other places after shootings pains... All pretty linked to my hormonal cycle.
So, armed with this i went in yesterday and mentioned endometriosis (after my gf suggesting that that might be something to look into) and immediately my Doc agreed that it's a quite likely possibility, and had taken loads of blood to check my hormone levels and is referring me to Holles St. for more tests (which I assume will be an ultrasound and laparotomy or something?). she seemed annoyed with herself that she didn't put 2&2 together earlier either!!
So now i guess i wait for an appointment... It's wrecking my head though. I kind of hope it is endometriosis, because then at least I'll know, you know? All sorts of questions swirling around in my brain (I'm raging I missed that info day :mad:) but for now it's just nice to know there's others on here...
Anywho, that's it, really. 0 -
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I had my clinic visit again last week, this doc said she didnt think it was endo.. She was suprised I had not had my scan yet after 8 weeks wait. I rang ultra sound to find out I could be wait a further 6 months!!! This is really annoying me now. I had to take time off work in FEBRUARY pending a tonsilectomy cos I was in training and missing alot of days. I was told I would be waiting max 3 months... now I am told I will be waiting at LEAST another 3 months if not more. This is EMERGENCY SURGERY apparently So the last 3 months of unpaid sick days were a waste of time! 0
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Sorry I haven't been on in ages! Up to my eyes with college work and being sick
I'll pop an update tomorrow probably, just came up with a lovely idea, how about we all meet up soon? I'm finished exams on the 26th of May. Would be nice to meet you all for maybe dinner and getting to meet each other properly!
Let me know what you all think!
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Hi Lainey - welcome to the endo thread.
I understand your relief to finally get a diagnosis - being told there's nothing wrong is the worst part.
To answer your question, my hubby is absolutely fantastic and 100% supportive - even though he gets the brunt of my PMS.!
The endo causes low progresterone which in turn makes me psycho for a week or so before my period. But he understands that this is part of me, and there is little I can do to change it. We end up having our monthly argument, and then I apologise and he hugs me and says it's okay!
It's good to have this thread to come on to for a rant if necessary!0 -
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