endometriosis... help!

Danniboo · 04-04-2013 8:15am

Guys,

Have to go for a laparascopy next week, just wondering what to expect and how long does recovery generally take afterwards, much time needed off etc?

Sinall · 04-04-2013 8:30am

Hi Danniboo! I had my laparoscopy on a Monday, took the rest of that week off, as well as the next Monday and was back in work the next Tuesday. So I had 6 working days off, plus a weekend.

Do all your food shopping etc before-hand and make sure you have things organised at home as you probably won't feel up to much for the first few days - I know I didn't! I have a desk job so was probably back at work quicker than someone in a more active/physical role. I was back in the gym 3 weeks after the operation.

Before the op I ate lightly for a couple of days. I also had to take some lovely drinks to 'clear things out' the day before but that actually wasn't too bad.

Good luck - hope it all goes well for you!

Danniboo · 04-04-2013 8:35am

Sinall wrote: »

Hi Danniboo! I had my laparoscopy on a Monday, took the rest of that week off, as well as the next Monday and was back in work the next Tuesday. So I had 6 working days off, plus a weekend.

Do all your food shopping etc before-hand and make sure you have things organised at home as you probably won't feel up to much for the first few days - I know I didn't! I have a desk job so was probably back at work quicker than someone in a more active/physical role. I was back in the gym 3 weeks after the operation.

Before the op I ate lightly for a couple of days. I also had to take some lovely drinks to 'clear things out' the day before but that actually wasn't too bad.

Good luck - hope it all goes well for you!

Thanks I was fine when they told me I was getting it done but after reading up about it i'm starting to get a little nervous. I'm getting mine done on a Thursday and presumed i'd be back in on the Monday but not so sure now. I do some desk work but also a small amount of physical work, running around etc.

Sinall · 04-04-2013 8:55am

I was exactly the same! Was fine and then panicked myself a few days before-hand. I asked my consultant to give me a letter for work which outlined that I would need one to two weeks off depending on my recovery time. The letter didn't state what exactly was being done - just that I was having an op under the consultant's care.

Personally, it took me about a week before I could wear 'work clothes' - eg anything with a proper waist-band! Even when I went back to work I wore a bandage over my belly button to protect it from tights/skirts/trousers etc. Bending and lifting won't be possible for a while either.

Danniboo · 04-04-2013 9:02am

Sinall wrote: »

I was exactly the same! Was fine and then panicked myself a few days before-hand. I asked my consultant to give me a letter for work which outlined that I would need one to two weeks off depending on my recovery time. The letter didn't state what exactly was being done - just that I was having an op under the consultant's care.

Personally, it took me about a week before I could wear 'work clothes' - eg anything with a proper waist-band! Even when I went back to work I wore a bandage over my belly button to protect it from tights/skirts/trousers etc. Bending and lifting won't be possible for a while either.

Thanks for that, I might ask for a note to the same effect. I work with all guys which makes it worse. I'm even mortified that i've to give my boss a cert for my appt yesterday which the consultant kindly wrote Gynaecology on:o

Sinall · 04-04-2013 9:09am

My boss is a man and I just said 'I have to have a minor operation on xxx date, when everyone else is in the office, so hopefully that's okay. I'll bring in a letter closer to the time.' and he said, 'Grand.' The letter was nice and vague but obviously the consultant's name was followed by 'Obstetrician and Gynaecologist.'

When I came back to work he said, 'How are you?' and I said, 'Fine' and that was it!

I know you'll be thinking through absolutely everything right now, it will all be grand and over before you know it!

Danniboo · 04-04-2013 9:12am

Sinall wrote: »

My boss is a man and I just said 'I have to have a minor operation on xxx date, when everyone else is in the office, so hopefully that's okay. I'll bring in a letter closer to the time.' and he said, 'Grand.' The letter was nice and vague but obviously the consultant's name was followed by 'Obstetrician and Gynaecologist.'

When I came back to work he said, 'How are you?' and I said, 'Fine' and that was it!

I know you'll be thinking through absolutely everything right now, it will all be grand and over before you know it!

Yeah I am freaking myself out a bit alright. Have to get bloods and meet the consultant next Monday so going write down everything I want to know.

Sure if anything it might make my boss ask less questions in future:P

Ms. Koi · 04-04-2013 5:56pm

Danniboo wrote: »

Guys,

Have to go for a laparascopy next week, just wondering what to expect and how long does recovery generally take afterwards, much time needed off etc?

I think Sinall's response is pretty accurate! I would recommend buying nice pair of loose trackie bottoms about a size up from your usual size to wear going home, the gas puffs you up and you will want to be comfy. You'll get the wear out of them!

Just lots of rest in the lead up, it will make your recovery easier if you aren't rushing around and into the op. Best of luck! xx

Danniboo · 05-04-2013 7:43am

kellief wrote: »

I think Sinall's response is pretty accurate! I would recommend buying nice pair of loose trackie bottoms about a size up from your usual size to wear going home, the gas puffs you up and you will want to be comfy. You'll get the wear out of them!

Just lots of rest in the lead up, it will make your recovery easier if you aren't rushing around and into the op. Best of luck! xx

Thanks so much for the responses guys. I'm working full time and in college part time so won't get that much rest beforehand. Think i'll take Wednesday evening off though as its just revision.

Sinall · 05-04-2013 1:52pm

Also - you may get a shooting pain in your shoulder afterwards from the gas used to inflate the stomach. I know it's a weird place to get a pain, but I was recommended peppermint tea by the nurses and it really helped! I drank some in the hospital and a few cups the day I got home as well.

Danniboo · 06-04-2013 6:07pm

Sinall wrote: »

Also - you may get a shooting pain in your shoulder afterwards from the gas used to inflate the stomach. I know it's a weird place to get a pain, but I was recommended peppermint tea by the nurses and it really helped! I drank some in the hospital and a few cups the day I got home as well.

Thats right the doc said that to me. I drink peppermint tea already so won't be too bad, imagines its because it flushes everything out. How long were you off for? My boss isn't showing much empathy, he responded with a smart remark when I explained I wouldn't be able to do much bending or lifting, running around for a while.

jennnn · 07-04-2013 10:38pm

Hi all,
I've been reading your posts here for a while now- it's all very familiar. Just wondering if anybody has had a hysteroscopy with their laparoscopy and what I can expect? Is it the norm to have both done together? It's seven weeks away yet, but I'm a bit nervous about it all.
I've had my appendix out laparoscopically and a D&C as a teen so I wonder will the pain will be similar. I've taken the week off work so hopefully that will be enough recovery time.
Jennnn

Sinall · 08-04-2013 10:40am

I had a hysteroscopy as well and it was fine. My consultant said that while they 'were in there' (ick!) it made sense to do the hysteroscopy to check everything out. To be honest, because you're under a general anaesthetic you don't really know what's being done and afterwards there's mostly discomfort in your stomach so you don't know what pain is from what. To my mind the hysteroscopy was a minor thing that they just did at the same time. Everything looked fine when they did the hysteroscopy and I much preferred to get it all done at once while I was out cold! The laparascopy was the main event for me and I was off for a week afterwards. They did some lasering away of endo during the laparoscopy and that can add a bit onto your recovery time. I had my operation on a Monday and was back at work Tuesday of the following week.

Sinall · 10-04-2013 10:50pm

Good luck tomorrow Danniboo.

Danniboo · 13-04-2013 1:30pm

Sinall wrote: »

Good luck tomorrow Danniboo.

Thanks a mil, it's all over now thank god, they did a hysteroscopy and laparascopy. Ended up being 14 hours in the hospital, was so sick and dizzy and couldn't pee. They admitted me to stay but I finally went so they let me home. Haven't spoke to the doctors yet, but the nurse had a look at my chart and they found some endometriosis and removed it.

Ms. Koi · 13-04-2013 6:15pm

Danniboo wrote: »

Thanks a mil, it's all over now thank god, they did a hysteroscopy and laparascopy. Ended up being 14 hours in the hospital, was so sick and dizzy and couldn't pee. They admitted me to stay but I finally went so they let me home. Haven't spoke to the doctors yet, but the nurse had a look at my chart and they found some endometriosis and removed it.

Happy to hear you are doing well!

madmaggie · 15-04-2013 12:24am

Hi all, just reading through this thread I can't get over the attitude of some medics. I had endo trouble 12 years ago, and was told ' the best cure for that is to have a baby'. Fortunately I had a brilliant gynae consultant, I was in agony for about a year before I went to her, she was so nice I just bawled at the first appointment! I had the laparoscopy, hysteroscopy, and she lasered the endo and fibroids all in the one go. I used to go around in a Ponstan daze before that, but never looked back. My message is, don't suffer in silence.

Sinall · 15-04-2013 9:28am

Glad you're home Danniboo and I hope the recovery goes well! I was kept in overnight after my op due to low blood pressure and dizziness but I tend to have low blood pressure anyway so it didn't take much to make it low enough that I was kept in!

Madmaggie - absolutely agree. It took me over 2 years to get a diagnosis and I was told by one doctor "Well, whatever it is, we'll only know if it affects your fertility when it actually starts to affect your fertility." Thanks very much!

Danniboo · 15-04-2013 2:35pm

Sinall wrote: »

Glad you're home Danniboo and I hope the recovery goes well! I was kept in overnight after my op due to low blood pressure and dizziness but I tend to have low blood pressure anyway so it didn't take much to make it low enough that I was kept in!

Madmaggie - absolutely agree. It took me over 2 years to get a diagnosis and I was told by one doctor "Well, whatever it is, we'll only know if it affects your fertility when it actually starts to affect your fertility." Thanks very much!

Thanks Sinall, going well just sooo bloody tired. Trying to be productive and do some study but just stupid with tiredness. Due to go back to work Thursday but think i'll take another day or two.

Izzybusy · 21-04-2013 3:02pm

Hi I am new to this forum , I was diagnosed with endo in 2007. And have since had two lapsrotomys and laparoscopic surgery for ovarian cysts which resulted i removal of my right ovary and endo, last year I had uterine embolisation for fibroids, I'm a bit of a mixed bag! I had some relief and the fibroids shrank but still uncomfortable with pain and bloating.i take pon stan and ibuprofen when pain bad! Fed up with it all at mo! My question is , has anyone found a good endo specialist that they can recommend as my cons is pushing for hysterectomy and I'm not ready for that! Thanks!

Izzybusy · 21-04-2013 3:04pm

Danniboo wrote: »

Thanks Sinall, going well just sooo bloody tired. Trying to be productive and do some study but just stupid with tiredness. Due to go back to work Thursday but think i'll take another day or two.

Good luck with your recovery danniboo, hope it all goes well for you!

Sinall · 24-04-2013 9:26am

Hi Izzybusy! I'm working in London at the moment so am currently seeing a consultant here. I'm sure one of the other ladies will have some recommendations for you. I know how it feels when you get fed up with it all! Some days it's easier to handle than others.

ohiknow · 06-05-2013 10:20am

Hi everyone, I've been reading back through everyone's posts. It's terrible to hear how much people are suffering but great to see the support. I had a large cyst removed my ovary about three years ago. I've suffered from irregular periods and always had really bad back pain around my totm. It was only when I developed acne that my GP referred me on for a ultrasound and they found the cyst. It then took almost two years of hospital visits before they decided to rove the cyst. I was in hospital for 3 days which was like torture, I'm not a good patient! Just before the lap the doc said he felt I had endo and that they would investigate during surgery and when they removed the cyst. Just before the lap was the last time I saw the doctor. One of the nurses told me I could go home the next day. I did ask if they had removedy ovary but they said all was intact. I didn't see a doctor in the hospital for another 6 months as my follow up appointment was cancelled. I also had an abnormal smear which needed to be repeated. I had to go to my GP as I was in pain after the lap and he told me that it was a dermoid cyst and the doc later told me I had no endo. Have to say, since the lap my pain seems to have increases. Told the gynae this who basically told me it was prostaglandin and that periods are painful. I felt like punching him in the face! My period before that visit had been so bad I felt I was having contractions for the day.

Anyway, I have all the symptoms of endo. And a lot of your stories ring true for me. I don't think my GP takes me seriously because firstly he's male and secondly a I am overweight. I honestly think that you don't get listened to if you are overweight as that is seem as the root cause of everything. My monthly cycle effects every part of my life from the pain to the psychological impact. I am trying to loose weight to see if that helps bit also to try to get a fair hearing from the doctor as I really feel things are not right.

Just wondering if anyone else has had a lap for cyst removal and told they don't have endo but they do or if I am over reacting!

Ms. Koi · 06-05-2013 12:04pm

ohiknow wrote: »

Hi everyone, I've been reading back through everyone's posts. It's terrible to hear how much people are suffering but great to see the support. I had a large cyst removed my ovary about three years ago. I've suffered from irregular periods and always had really bad back pain around my totm. It was only when I developed acne that my GP referred me on for a ultrasound and they found the cyst. It then took almost two years of hospital visits before they decided to rove the cyst. I was in hospital for 3 days which was like torture, I'm not a good patient! Just before the lap the doc said he felt I had endo and that they would investigate during surgery and when they removed the cyst. Just before the lap was the last time I saw the doctor. One of the nurses told me I could go home the next day. I did ask if they had removedy ovary but they said all was intact. I didn't see a doctor in the hospital for another 6 months as my follow up appointment was cancelled. I also had an abnormal smear which needed to be repeated. I had to go to my GP as I was in pain after the lap and he told me that it was a dermoid cyst and the doc later told me I had no endo. Have to say, since the lap my pain seems to have increases. Told the gynae this who basically told me it was prostaglandin and that periods are painful. I felt like punching him in the face! My period before that visit had been so bad I felt I was having contractions for the day.

Anyway, I have all the symptoms of endo. And a lot of your stories ring true for me. I don't think my GP takes me seriously because firstly he's male and secondly a I am overweight. I honestly think that you don't get listened to if you are overweight as that is seem as the root cause of everything. My monthly cycle effects every part of my life from the pain to the psychological impact. I am trying to loose weight to see if that helps bit also to try to get a fair hearing from the doctor as I really feel things are not right.

Just wondering if anyone else has had a lap for cyst removal and told they don't have endo but they do or if I am over reacting!

You poor thing! I'm sorry your doctor hasn't been more understanding. First off I would recommend you try and find a new doctor. You need a doctor who is on your side, won't criticize and who will take you seriously. They are out there, I promise! Where abouts in the country are you?

The lap should have shown up endo, but it's possible they missed it. Sometimes a small amount of endo translates to a high amount of pain. I would ask for a gynae referral and take things from there. Good luck xx

ohiknow · 06-05-2013 12:30pm

It's hard to know where I am at. I'm in dublin so lucky in terms of access to hospitals and that. Having spoken to other people I know my cycle isn't normal, but it's hard to get that across. I haven't missed much work because of pain but that doesn't mean I've been able to Do much when I am in work. I have a good fee scrapes on my car and all of them happened the week or two before my totm. I think my bf thinks I've lost it but its hard to explain the cloudy thinking and pain to someone else. I get bad pain in my neck and shoulders too which doesn't seem to make much sense. Nuasea, sick stommach, bad dreams, the works! when I loose some more weight I'll go back for another opinion. I really feel that's the first thing they'll tell me to do so want to take that out of the equation!

Ok, moan over!!

Just had a particularly bad few days with it!

Ms. Koi · 06-05-2013 12:33pm

ohiknow wrote: »

It's hard to know where I am at. I'm in dublin so lucky in terms of access to hospitals and that. Having spoken to other people I know my cycle isn't normal, but it's hard to get that across. I haven't missed much work because of pain but that doesn't mean I've been able to Do much when I am in work. I have a good fee scrapes on my car and all of them happened the week or two before my totm. I think my bf thinks I've lost it but its hard to explain the cloudy thinking and pain to someone else. I get bad pain in my neck and shoulders too which doesn't seem to make much sense. Nuasea, sick stommach, bad dreams, the works! when I loose some more weight I'll go back for another opinion. I really feel that's the first thing they'll tell me to do so want to take that out of the equation!

Ok, moan over!! Just had a particularly bad few days with it!

I would ask the gp to send it asap, sometimes waiting lists to be seen initially can be very long and at least you have your foot in the door. I wouldn't back down on this at all. If you think there is something wrong, argue your case!

Danniboo · 06-05-2013 8:07pm

Hi guys, should I be worried about one of my incisions still being quite sensitive more than 3 weeks after my laparascopy

ohiknow · 06-05-2013 10:07pm

I'm not sure. I know I was sore for a while after mine and my stommach was bloated for a long time after it. If its hot to touch or red or anything like that I would get it checked out. Definitely get it checked if you think it doesn't feel right. It will give you peace of mind if nothing else.

Ms. Koi · 06-05-2013 11:26pm

Danniboo wrote: »

Hi guys, should I be worried about one of my incisions still being quite sensitive more than 3 weeks after my laparascopy

If you feel that they aren't healing properly, pop into your gp. They will be sensitive for a while, but I don't think they should be sore. No harm in getting them checked. The chemist should be able to tell too.

madmaggie · 07-05-2013 12:08am

@ohiknow, You really have been through the wringer! I would suggest a going to a female gp and female consultant, at least they know what a period feels like. I was so lucky, had a lovely gp and a fantastic female gynaecologist. Even when I meet her in the supermarket she still stops to ask how I'm doing. Having someone sympathetic and someone who believes you is half the battle. Best of luck to you

ohiknow · 07-05-2013 3:41pm

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!

madmaggie · 08-05-2013 12:06am

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.

Ms. Koi · 10-05-2013 2:49am

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

ohiknow · 10-05-2013 7:17pm

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?

Danniboo · 11-05-2013 3:22pm

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?

JillyQ · 11-05-2013 3:31pm

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

MzMollz · 13-05-2013 3:36pm

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?

Ms. Koi · 13-05-2013 4:19pm

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!

ocli64 · 20-05-2013 7:56pm

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.

madmaggie · 22-05-2013 11:31pm

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.

LegacyUser · 23-05-2013 9:48am

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

jennnn · 28-05-2013 9:27pm

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

JillyQ · 28-05-2013 10:21pm

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.

Danniboo · 31-05-2013 9:57am

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

Ms. Koi · 31-05-2013 11:04pm

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!

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!

ShaShaBear · 31-05-2013 11:15pm

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!

) but if this is as likely and as serious as my doctor suggested, I really want to get to the bottom of this!

BAF90 · 01-06-2013 3:41pm

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?

Ms. Koi · 05-06-2013 12:44pm

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?

Danniboo · 11-06-2013 6:14pm

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.

Ms. Koi · 12-06-2013 11:56am

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

endometriosis... help!

Comments