endometriosis... help!

spurious

Ask your doctor about the possibility of an endometrial ablation as an alternative to hysterectomy.

Spookyspook

Sorry if this has ready been mentioned but has anyone tried acupuncture for endo. and did it work at all? I'm running out of options and my laparoscopic surgery didn't seem to work at all.

mandy2012

Hi looking for some info please. I have endo and attended hosp for yes having had laps and medication. The last time doc said only thing left to do is hysterectomy, I chickened out and haven't been back since that was about 6 yrs ago. What else can be done now or is it still only option. The last lap I had was for ivf and ivf doc said endo was everywhere including 1 tube blocked I didn't ask for any other info as I just wanted to get pregnant, which I did. I am due to get my gallbladder out next month and am now wondering could the endo now be there. Should I be going to endo specialist instead of gastric doc ? I'm worried I'll get the gallbladder out and still have pain from endo. Has anyone any similar experiences ?

Spookyspook

There's a good group on facebook if ya don't get any responses here. There are loads of women on it who might have the same experiences you have had/are having. I also was told the only thing left was a hysterectomy. I stopped going to that doctor.

Sinall

Spookyspook wrote: »

Sorry if this has ready been mentioned but has anyone tried acupuncture for endo. and did it work at all? I'm running out of options and my laparoscopic surgery didn't seem to work at all.

I had two courses of acupuncture to treat the symptoms of endometriosis and I found it great - particularly for the pain - and it worked best for me if I had a session around ovulation and another one just before menstruation.

KYl

Hello girls.
Writing to ask about contacts of endo specialists in Ireland. I've just moved here and don't know anyone(
I've read that Dr. Alazzam in the Beacon hospital is good. Maybe someone else?
It would be great if the specialist has recto-vaginal experience.

if someone has already visited Dr. Alazzam can you please tell about it. How long the visit is? Can he look at my previous surgery video? Does he do only operations or also can think about some treatment to you and can be attended regularly?
Or I need to look for the GYN with the endo specialisation also?

Thank you very much for your answers!

princess-lala

Ladies anyone get hip pain? Like you think it's the hip but Its endo?

dollyk

princess-lala wrote: »

Ladies anyone get hip pain? Like you think it's the hip but Its endo?

yes all the time, never thought about it, just assumed that it was from jogging for years.

princess-lala

dollyk wrote: »

yes all the time, never thought about it, just assumed that it was from jogging for years.

I'm in A&E since 6pm (Monday) with severe hip pain! Only registered with me before I wrote my previous post that it could be endo related

dollyk

I canged my whole diet last month, very little carbs
and cooking with coconut or rapeseed oil.
more veg " frozen" and have cut out huge on prosessed food.
Well this month only bled for maybe 6 days :eek:
and wasnt very heavy.
does anyone thing diet can be part of it too.

princess-lala

Back to the hospital today, I have been having severe hip pain and xrays have said the hip is perfect :rolleyes:

Bleeding like a mofo too, i knew it was too good to be true with the coil!

elly123

princess-lala hope your ok. I get bad hip and lower back pain around the time my period, for ages i couldn't figure out what it was from, i taught it was from exercising but then took note and realised i get it around the time i'm due my period or just when there finishing, its like my lower back and hips become really weak, its a horrible feeling!

dollyk, i was at a seminar a few years back and they said that diet can play a huge part in endo. They said to avoid dairy and red meats. if you google endometriosis diet you will see a list of the do's and dont's for the diet.

princess-lala

Laparoscopy and Hysteroscopy booked for July!

Is it wrong to be excited??

I am now bleeding 34 days

sam34

sleepyheadh, I've deleted your post for a few reasons- it's off-topic for this thread, it's site-wide policy not to discuss moderation/rules on-thread and lastly from extensive discussion elsewhere, I know you already know the answer to the question you posed. If you want to discuss the issue further, take it to the feedback forum, I will not be engaging in discussion with you on this forum, or health sciences, or by pm. Please do not post on that topic in this thread/forum again

princess-lala

Girls I need some advice/guidance/words of wisdom -

My lap is on Thursday, pre-op is Tuesday! So i want to go on Tuesday armed with a million and one questions.

I had the coil fitted in September, until after Christmas it was fine, minimal bleeding and the pain while it was still there it had lessened! Then holy jaysus the bleeding came back with a vengeance! Pain started much worse than ever, I've had four periods since March - varying from 13 days each to 54! Yes you've read that correctly a 54 day period!! I'm surprised I haven't got anemia too!!

I had my smear and bled for 10 days after it! Thankfully it came back clear!

Yesterday I had an ultrasound and it showed two cysts on the left ovary, neither massive but both over 3cm, she wouldn't tell me about the right ovary!

This lap is supposed to be diagnostic and investigative - does that mean if she sees endo she'll just leave it there or what?

I know i probably sound like a raving lunatic but I'm so frustrated with all of this, I just want the happy non psychotic lala back!? The pain I can cope with but the constant bleeding I can't!!

Also what's best for pain? They've never ever given me anything from the gynae side for pain so i drug myself up with otc stuff and probably killing my liver in the process!!

Actually glad to see the thread is so quiet lately, must mean you lot are feeling OK

nak

Sounds horrible. I had a diagnostic lap done last month (3rd lap and finally got a diagnosis of endo - first one said I had PID - I don't) and they were unable to remove any adhesions as they started to bleed. Had a Mirena inserted and a D&C, so will see how that goes - so far so good.

I was told if further surgery was required I would need to take Decapeptyl for 3 months beforehand to minimise bleeding and that it would be a more serious op due to bowel and bladder adhesions.

They can't really tell you what they're going to do until they see what's going on in there. Fortunately I don't want to have children, so plan on avoiding further surgery if I am pain free. Was never prescribed pain relief either, but hot water bottle and Feminax Plus (naproxen) helps me a bit, but if really bad nothing works.

Good luck with the op.

princess-lala

Hey ladies, hope yer all well!

Anyone have any experience of decapeptyl? I got my first injection last week and have a little question

starlight1

princess-lala wrote: »

Hey ladies, hope yer all well!

Anyone have any experience of decapeptyl? I got my first injection last week and have a little question

Hi princess-lala

I had 3 month injection of prostap last year (also a GNRH similar to decapeptyl)

Feel free to pm and if I can help I will

Jabberwocky_I

princess-lala wrote: »

Hey ladies, hope yer all well!

Anyone have any experience of decapeptyl? I got my first injection last week and have a little question

Hi, I had my first 3 month injection last month. How are you finding it? I've been feeling very nauseous. It's a constant thing so it's really bothering me. My gynae said this is an uncommon symptom. Have you experienced this at all?
I still have two very large endometriomas on each ovary which I'm having further surgery to remove soon. I can't figure out if the nausea is due to those or the injection. I had nausea before my lap last month so it's hard to say if it's down to the injection or not.

I'm not sure if I'll be able to answer questions you have re decapeptyl but please fire ahead anyway and if I can help, I will.

Pinkballonn7

Going for my first ever gyno appointment next week with endo symptoms. I'm 99% sure I have this condition, how do I go about talking to the dr about my suspects? Im so nervous and the only way to diagnose it is by lap- what's the point of the pelvic exam? Will he even do a pelvic exam if he agrees that it's endo or what? Sorry for all the questions just so nervous.

nak

Pinkballonn7 wrote: »

Going for my first ever gyno appointment next week with endo symptoms. I'm 99% sure I have this condition, how do I go about talking to the dr about my suspects? Im so nervous and the only way to diagnose it is by lap- what's the point of the pelvic exam? Will he even do a pelvic exam if he agrees that it's endo or what? Sorry for all the questions just so nervous.

Pelvic exam is likely, I had one at my first appointment here. I was given the choice of having a lap done as I had been on the pill long term and was still getting symptoms. Make a list of your symptoms before you go. Good luck.

Pinkballonn7

nak wrote: »

Pelvic exam is likely, I had one at my first appointment here. I was given the choice of having a lap done as I had been on the pill long term and was still getting symptoms. Make a list of your symptoms before you go. Good luck.

I've been on the pill for 2+ years and have been having symptoms for the past 8 months! I've been keeping a diary of symptoms on my phone with a period tracker app since April so hopefully that helps! Thanks for the advice xx

princess-lala

I'm seeing Hugh O Connor on Tuesday I'm over the feckin moon.

I've spent three months on Decapeptyl and cannot deal with it anymore!

starlight1

princess-lala wrote: »

I'm seeing Hugh O Connor on Tuesday I'm over the feckin moon.

I've spent three months on Decapeptyl and cannot deal with it anymore!

Great news lala. Just be prepared for a bit of a wait on Tuesday as clinics are usually busy. I don't see O'Connor but waiting area is the same. Also you may see one of his team and not him so just be prepared for that too. (That's presuming its the public clinic you're attending)
best of luck and let us know how you get on

princess-lala

Tbh I thought I'd be waiting months for an appointment. I called his secretary, she wasn't impressed at the letter my doc sent up so asked for the history. Told me to come in at a time that I would see only him.

I was talking to her again yesterday and she said she had been telling him about me and my complications. She said I was very last on the list.

I'm public btw. His secretary is actually an angel

elly123

Hi lala, delighted you got your appt. Do you mind me asking how long you were waiting for a public appt? i sent a referral letter to another doc in the coombe back in May and her waiting list for private was 4.5months and the public was alot more. Thankfully i have been ok the last few months that i decided not to follow through and make an appt to go private and im wondering if i should get a new referral to get back on the public waiting list. I am going to try for Baby no. 2 and i cant afford to pay for a laporoscopy privately should i need one (had one to clear out the endo while trying on no.1) I also had an early miscarriage this month so im thinking i should get myself back into the system now! i had been attending Prof Crowley for 15 years prior to baby no.1 but was discharged after i had my son.

princess-lala

Truth be told I wasn't waiting long at all.

I had surgery in July after two years begging for it, she opened me and closed me! Said Hugh is my man.

I've been on decapeptyl since, due to other illnesses I can't have this injection again. My current consultant is terrified to do another lap in case of damage to my already damaged bowel.

When I rang the secretary I said I knew I was in for a long wait and if I could stay public please do but if private was the way forward do it.

She kept me public and in fairness to her got me in very quickly due to my many ailments. I am also under two other doctors in St James's so that probably helped.

nak

elly123 wrote: »

Hi lala, delighted you got your appt. Do you mind me asking how long you were waiting for a public appt? i sent a referral letter to another doc in the coombe back in May and her waiting list for private was 4.5months and the public was alot more. Thankfully i have been ok the last few months that i decided not to follow through and make an appt to go private and im wondering if i should get a new referral to get back on the public waiting list.

I waited a year to see Hugh O'Connor, had a lap done by his registrar in May (open & close job, they said I would have to come back for surgery after 3 months of Decapeptyl) and still haven't seen the man himself. Asked to switch to private a couple of weeks back as I want to discuss options with the consultant - waiting on an appointment but looks like February at the earliest.

GaGa21

Hi all,
My first post on this thread. Have had heavy and painful periods most of my life. Had my first D&C aged 14 and was on the pill for 10 years. Came off it to give my body a break. Periods were regular, painful but manageable apart from a few episodes. Usually admitted to hospital, diagnosed with a cyst and sent on my merry way. Was on Ponston for pain for a year in 2014 and this year has been the worst of my life painwise. Periods were so painful i was passing out and vomiting every month!
I went to a doctor in January and insisted on a referral to a Gyne. He sent a letter to the Coombe and I've been waiting all year. Finally after another admittance by ambulance to a&e in pain, where another cyst was diagnosed, my appointment at the Coombe was brought forward.
I was seen last week by one of the Dr's team, where a history and pelvic exam were done. Have a laparoscopy set for next month for possible endo.
Am nervous of the op. Anyone have advice on recovery time, possible outcomes? As i am in late 30's, married and semi-trying for pregnancy, i am also wondering about fertility issues too.
Sorry for rambling, just don't know what to be thinking. Any advice welcome.

princess-lala

I had a lap in July, on a Thursday. Friday I though I was dying with the pain and went back to work on Tuesday