endometriosis... help!

Little Miss!

Lainey89 wrote: »

Hey Little Miss,

My mam had a complete hysterectomy to sort out her endo about ten years ago and I think it helped. Tho a lot of that decision might depend on your age and where your endo is, as the hormone replacement therapy you have to go on after also has a lot of side affects.

I went to my doctor last month to ask about stronger painkillers too. She didn't listen to me when I tried to explain what I was currently doing to manage the pain and just wrote me a prescription for nurofen and told me to take panadol in-between. Ended up going to the college doc about something else and decided to ask him about the endo and see what his thoughts were. He was much nicer about it, and told me how to take NSAI's (ibuprofen) properly.

On another note things I've found that help a little are:

• lying on the couch with my feet up on the back of it
• rubbing lavender oil/ evening primrose oil into my belly
• reflexology

I also read that an ice pack works better than a hot water bottle but haven't tried that one yet!

Hey thanks for the advice, will have to try rubbing oil on my tummy to see if it helps. I'm at the stage now that i'm lucky if i get 2 weeks a month with no pain. It used to be only when i had my periods but now it's almost every day. I've lost faith in all doctors, the only thing doctors can do to help me is to prescribe painkillers.

It's so hard to try hold down a full time job, pay a mortgage & bills when ur constantly in pain with absolutely no help from anyone, sorry if i'm ranting i just get so frustrated with this damn disease sometimes

Lainey89

It's ok, sometimes a good rant is needed to clear the head!

faw1tytowers

I finally go tmy appointment for June 28th but as you know the last doc I saw is only going for a ultrasound as she doesnt think I have endo now.... Whatever it is or is not, I hope this scan does the job as previously I have been told I should get a lapro.:(

ppink

I had a laparoscopy a few months back and was told several times over that the only way they can find endometriosis is by lap, they cannot see it on scans.

can I ask do any of you exercise much? reason for asking is I exercise a lot- its how I get rid of period and IBS pain. If I am in pain i jump on the treadmill and it eases it within a few minutes.

faw1tytowers

ppink wrote: »

I had a laparoscopy a few months back and was told several times over that the only way they can find endometriosis is by lap, they cannot see it on scans.

can I ask do any of you exercise much? reason for asking is I exercise a lot- its how I get rid of period and IBS pain. If I am in pain i jump on the treadmill and it eases it within a few minutes.

Not so much now, not actively, other than running after my 2 young ones. However I was very active as a teen and sporty but still had same issues and would be crippled with pains.

ppink

faw1tytowers wrote: »

Not so much now, not actively, other than running after my 2 young ones. However I was very active as a teen and sporty but still had same issues and would be crippled with pains.

Oh well.....there goes another theory;). maybe I have just convinced myself that it works for me:p

it did not effect you having children then. I thought that was one of the big issues with it.

Lainey89

ppink wrote: »

it did not effect you having children then. I thought that was one of the big issues with it.

I think that depends on what stage its at. And the stage you have has no relation to the pain you experience what so ever. ie Stage 1 can have sever pain and some one else with stage 4 could have very little pain.

Anyone else have a tipped uterus as well?

Raedwald

Hi Ladies,

I'm looking for a second opinion about my current condition. I have both Endo and PCOS and it has gotten to the stage, were I have lost all confidence in my current medical team and want to get second opinions on what they have told me so far and the treatment options available to me.

So basically I was wondering could anybody tell me where would be the best place to go ie Rotunda or Holles St or somewhere unbeknownst to me and who would I want to have a look at my case file.

Thanks.

faw1tytowers

ppink wrote: »

Oh well.....there goes another theory;). maybe I have just convinced myself that it works for me:p

it did not effect you having children then. I thought that was one of the big issues with it.

Well remember I have not been confirmed yet.

Although my friend did have endo... and told she would have fertility problems. She now has 3 children and no more endo!

Lainey89

faw1tytowers wrote: »

Although my friend did have endo... and told she would have fertility problems. She now has 3 children and no more endo!

Did she have the endo lasered off and it never came back? I was under the impression that there isn't really a cure for it and that you just have to try and manage it and stop progression via the pill or other methods?

faw1tytowers

Lainey89 wrote: »

Did she have the endo lasered off and it never came back? I was under the impression that there isn't really a cure for it and that you just have to try and manage it and stop progression via the pill or other methods?

Yes she had all the treatments and it kept growing back it was very aggressive and she was told she was most likely infertile.....

I have heard pregnancy cures it... but some argue this point but agree it certainly lessens its effects.

pregnancy may cure endometriosis in three ways. Progesterone tells the cells to stop proliferating and differentiate (grow up into an adult cell). Progesterone also signals the ovary to NOT ovulate and thus, the ovary does NOT produce estradiol. Estriol goes into the estrogen receptor and blocks out estradiol and xenoestrogens from stimulating the estrogen receptor, and causing the endometriosis to grow.

Endo causes infertility in SOME women and there are treatments and proactive ways of increasing your feritlity if you have endo.

bubbaloo

I have severe endo but after much heartache, I had my little boy in 2009.
I was able to get pregnant - and did so twice beforehand - but m/c both times. This was becaused the endo caused the quality of my eggs to be crap and they never had a chance!
Pregnancy does not cure endo - but endo does not occur when you're pregnant. I had a laparotomy in 2007 which cleared all the endo and gave me a window of opportunity before it grew back. I was lucky to get pregnant (with the help of fertility drugs) within that window and it was successful pregnancy, resulting in my little man arriving in 2009!

For someone looking for help, I could not say enough about my gynae - he's in Ballinasloe in Galway and his name is John Monaghan - feel free to pm me if you want all his contact details. He's fab!

Netanya

I finally got to my appointment today. After a year of having two weeks a month or more of pain I went in with a list of everything that was wrong. Ten minutes later I am out the door with an appointment for a lap in early august. The doc was happy to say she would feel it is moderate endo, that they are going to go in and laser it out and, to help me out over the next couple of years until I am ready to have kids, insert a coil. I almost cried. It was the most efficient and effective visit to a specialist I have ever had.

I have my fingers crossed that the lasering works and that I can get back to running and feel like I have my own life again. I also just got engaged and I want to be able to concentrate on that and not my pain as soon as I can.

faw1tytowers

there talking endo on embarressing bodies now.. said it takes 7-8 years to get diagnosed on average.... so we are not alone!

Lainey89

I read that somewhere between 5 and 10% of women have it which is quite a high number. But I guess if you had no pain from it you wouldn't really know there was a problem unless you were concerned about having heavy periods. I remember seeing Embarrising Bodies awhile ago and they were asking women what they thought an average flow would be. Loads of them reckoned it was about 200 ml, when the average is between 20 and 80ml. Good that it got some coverage tho.

faw1tytowers

Lainey89 wrote: »

I read that somewhere between 5 and 10% of women have it which is quite a high number. But I guess if you had no pain from it you wouldn't really know there was a problem unless you were concerned about having heavy periods. I remember seeing Embarrising Bodies awhile ago and they were asking women what they thought an average flow would be. Loads of them reckoned it was about 200 ml, when the average is between 20 and 80ml. Good that it got some coverage tho.

Ya i heard 3 tea spoons of blood. I loose that every few hours I am sure!

Lainey89

I think they were measuring with a moon cup and a measuring jug. It sounds a little messy but seems to be the only way to know for sure. I always found it a bit confusing when doctors would ask is your flow was heavy when you'd have very little frame of reference!

Netanya

I got my diagnosis today. It seems I am very lucky and I feel blessed to be honest. The endo had been hiding on the back of my womb and spreading to the ligaments that support it. But dr. Anglim seemed truly amazed that there was none to be found on my ovaries or tubes. So my fertility should be totally normal. I really do feel so lucky about that as I had mentally prepared myself to be told I couldn't have children.

To control it I had all of the area lasered and then to prevent regrowth they inserted a coil. I am crossing my fingers that this all works. I have to say the pain in my shoulders is worse than my stomach but I'm told that dissipates a day or two after the lap.

I really hope everyone here is doing ok and taking good care of themselves.

bubbaloo

That's is great news Natanya. You could ease the shoulder pain by moving around (if you can). I know it's not easy but it helps because the pain is just trapped gas from the op and moving around dislodges the gas.

It's great to hear it wasn't on your ovaries/womb - such a relief for you I'm sure.
In any case, endo doesn't have to mean that you can't have children so don't ever give up hope!
I have very severe endo and (admittedly after years of crap) I have a little boy who's now 2. I am having my right ovary removed in 3 weeks but my surgeon is hopeful and confident that we will be able to conceive again from the left. Fingers crossed! (Not my legs!! )

Netanya

Thanks Bub, I have been moving around as much as possible and this morning the pain in the shoulders has really eased off, I used heat patches on them as well and it seemed to help.

The endo was on my womb and uterosacral ligaments and was quite severe actually it just wasn't on my ovaries or tubes which the doc thought was a bit unusual.

Great to hear about your little boy, good luck with your op and I have my fingers crossed for you having another little bundle of joy.

bubbaloo

Well, here's the good news........ I still have two ovaries!!
I had my surgery on Friday and the surgeon told me that when he opened me up he thought "oh god, this is a disaster!" but as he cleared the endo away (lots and lots of it) he realised that my ovary had been pushed back behind my womb. When he moved it back into the correct position he saw that it was okay and he didn't need to remove it!
He said that things are in good condition now and we have a "window of opportunity" .
So once I'm recovered, in about 6 weeks, we will "get started".
My husband is obviously thrilled! :pac:

MarthaMyDear

My doctor also suspects that I have endometriosis but he said he hopes he is wrong..

I'm supposed to book a laparoscopy (sorry spelling) to check for it but have been putting it off as I've never been under general anesthetic and I'm a wuss for pain!

I'm afraid they'll go through the whole procedure and then afterwards be like nope nothing wrong and I'll regret going for it...

bubbaloo

Marha, I honestly wouldn't rule out surgery.
Isn't it better to have it and know if you have endo that continue in pain (or whatever symptoms you might have) and search for answers?
Admittedly, I'm not too bad with pain - but only because I've been through 3 laparoscopies and 2 laparotomies as well as a c-section, but a laparoscopy is not too bad. It's just a day surgery with a 5-7 day recovery period.
My own opinion would say a week of that is better than months/years of not knowing!
Good luck to you.

MarthaMyDear

Thanks

That's true! I have a few of the symptoms but I've never been in pain so bad that I pass out or anything like a lot of people so I wonder if I'm being a bit dramatic!

I'm on the pill but my period pains are quite severe and would have me doubled over. If I take feminex (I love that stuff!) or nuerofen plus then I'm not too bad. I have dull cramps all during the month too but never really strong enough to interfere.

I'm only 19 so the thought of going into hospital and being put under general is a bit daunting!

Lainey89

Martha I'd second bubbaloo's comment about it being better to know if you have endo or not. I was scared the first time I got put under general but its a short op and really feels like no time at all once you wake up. All my external exams and ultrasounds were clear so really the op is the only way to tell for sure, and for me was better then wondering if it was all just in my head.

MarthaMyDear

Laparoscopy booked for coming Monday

Can't help but be nervous!

Sound Bite

Martha, have to agree with the other posters above. Better to know sooner rather than later. took until my late 20s and the change in my life has been incredible.

The procedure itself it not painful. You just feel a little tender afterwards, same as you would with an surgery.

IMO if you have endo, the sooner you get it treated the better. Life is too short to up but with years of agony.

Best of luck. PM me with any questions if you want.

MarthaMyDear

I'm afraid of waking up afterwards and being really sore...thank everybody though this forum is so supportive

Lainey89

They give you quite a bit of painkiller while you're under so you shouldn't feel to much : ) Then you just need to take it easy for a few days. It might be an idea to ask for anti sickness drugs with the anesthetic tho as it can make people very queasy sometimes!

Good Luck : )

bubbaloo

Martha - best of luck. Honestly if you get an answer from the lap it will be all worthwhile.
After the lap the main pain will be in your shoulder. They use gas to expand your stomach so they have a good view inside. Once they close you up the gas is still trapped in there and usually lodges in your shoulder and the best way to ease it is to move around as much as you can.
The wound itself is only a small incision in your belly button - and maybe another tiny incision around your bikini line. They can give you a prescription for strong painkillers so don't worry too much about being sore.
A week later you will as fit as a fiddle again!
Let us all know how it goes.