endometriosis... help!

Lainey89 wrote: »

Hey Ladies. I hope everyone is doing well. I thought I'd add an update having been to a new consultant twice now.
I'm in under the public scheme so I haven't actually been able to see the endo specialist himself yet but have seen two members of his team who were nice. I did feel I was getting a bit of mixed information tho as one told me endo isn't at all hereditary and the second one said it seemed that it was/could be. I told them I wasn't pushed on going on any hormonal based medications but they convinced me to try Provera (synthetic progesterone) for 3 full months.

I just about managed the 3 months as I had a lot of side effects including hair loss, slight eye sight disturbance and generally feeling like I didn't want to be touched. It did reduce the bleeding but not the pain by much so I wouldn't go back on it again.

Fast forward to December and I was off the Provera for about 10 weeks and was attempting to manage my endo with pain killers only. This plan doesn't appear to be working well for me. I had to defer all my exams as I was in so much pain. I had to leave my first exam early and was made go talk to the nurse and paramedic that were at the exam hall. Turns out the paramedic's wife has endo too and he was so nice and understanding!

I've decided to go back on the pill until I finish my Master's so I can get through my course work and exams without too much inturuption. I have another appointment with the consultant in April in which I think I will ask about the possibility of surgery and an IUD. Has anyone had trouble with adhesions or found an IUD in any way helpful to them?

pm sent

hello to everyone!
Im just 3 days after my 3rd lap (Tuesday). first was elective in 2011 to have the endo diagnosed (after many years of misdiagnosis!!). He said it was severe pelvic endo and he cleaned up what he could. Had lots of adhesions involving the bowel. but I managed well after with the pill and painkillers. Had an emergency lap july 2013 for a ruptured endometrioma-Consultant took me to theatre and said that I had lots of adhesions and basically it was beyond his level of expertise and referred to me his colleague as my previous consultant had retired.
Saw her in Sept and she did a full exam, scan, history etc and recommended a lap which I had last tues in CUMH. Was admitted for 745. In theatre at 1030 and woke at sometime around 2 (but apparently id been awake but complaining of lots of pain). Had 6 top ups of morphine (i only remember 2!!) in recovery and was taken back to the ward. Id a drain in and was quite sore but was well looked after. I ended up staying for 2 days as the drain didn't come out until 30 hours later because it was draining a fair bit of blood but once it was out wed evening i was a new person and went home yesterday morning. not feeling too sore and taking it easy. have 3 weeks booked off work (im a nurse). She came back the evening of my op with her team and basically said she did what she could - my rectum (:eek:) was badly stuck to my uterus and she couldn't separate it safely (fair enough and it explains the unbearable bowel pain i get). She freed up the ovaries and ran some dye through the tubes-left blocked and right maybe partially blocked but dye did flow. cleaned the endo up as best she could and drained a few cysts but said the endo was quite active and extensive and recommended decapeptyl. Unsure about it and we had discussed it at before. So i have the prescription and the pharmacy are ordering it in. she also prescribed me livial which will hopefully help with any side effects. nervous about starting it but will give it a go.
I did ask about fertility and she said in her opinion it will be in issue for me but we can talk about that again (its not that its not important to me but im single and 32 so its just about trying to preserve it). would love to attend that endo day in Dublin but think im going to be away. anyway hope ye are all doing ok xxx

Hi Starlight!
Well i'm 8 days now and doing well. minimal pain to be honest-just taking paracetemol as needed. and taking it easy!!Am bleeding a little too but they did a fair bit of poking around so its to be expected I suppose. Yes the pain in the recovery room was terrible but well relieved by the morphine!!!

Well the pharmacy rang yesterday to say the decapeptyl was in so going to collect that later on. I didn't realise the price was over 1000 euro but the DPS card covers it so 144 euro. its an injection every 3 months so what i'm dreading is if I do get really bad side effects i've to put up with it for the 3 months. but nothing ventured nothing gained!!ill give it a go and I received my follow up appointment in CUMH for end of march.

The consultant said I can start it at anytime as i'm on the pill anyway-I don't have to wait for my next period. I've pre-warned family and friends that I could turn into a hormonal monster though!!!im hoping to get back to work around the 27th feb. I drove to the local shop on Monday and got on grand. Hoping your doing well and thank you so much for the offer of the info from the Endo day in March. You're a gem. Any info would be great. Hoping theres one in Cork soon because I would def make it my business to go.

My friend was diagnosed the same time as a friend of hers. She had 2ops and her friend has had 6 and part of her bowel removed. My friend had the coil put in and given the pill at the same time. This stopped the endometriosis coming back. Her friend has finally seen one of the top endo specialists and has been given the coil and pill and had finally got a hold on it.
Both were in a lot of pain and missed a lot of work and took a lot of strong pain killers.
They were both fine until they came off the pill and that's when their endometriosis really kicked in

Hey guy. I had a rough week last week. Ended up being ambulanced to A&E last Tuesday evening (great way to spend your bday!) with severe lower right side abdominal pain and vomiting. I was pretty sure it was my appendix and not endo related but the doctors seem to think otherwise. I was admitted and had an ultrasound on the Wednesday and a CT scan with contrast on Thursday. Both scans were completely fine as were my bloods despite the fact morphine was the only thing that took the pain down to a manageable level. I got discharged on Friday with no answers.

This is not the first time this has happened but it is the worst it has been. I thought it was just general crampiness but the level of pain shot up really fast this time. Has anyone else had repeated bouts of really localised severe pain in their lower right abdomen?

I have. Sounds very similiar. Very bad pain in the lower right abdomen. I have been to a&e twice in the last few months the pain has been so severe. First time was November, they suspected appendicitis and admitted me for observations. They did an ultra sound and going a cyst on my right ovary. They also said the right ovary is very close to my uterus and could be causing problems. Have had another ultrasound since and the cyst was gone. I was back in a&e on Wednesday night with the same thing. Lower right side. No vomiting but nausea and diarrhoea. I had it from Sunday and succumbed late Wednesday night. Was very scared by then. They discharged me with gastroenteritis or something similiar. The pain has really only settled today. I've been put back on the pill so really thought none of this was supposed to happen! I've spent most of the night crying, damn hormones! Not sure where to take it next. Hope you are feeling better

Enc wrote: »

Oh no!!!
My friend was getting sick too with pain and also needed strong opioids! When they did the op they could tel her her ovaries were stuck one to the bowel and the other to the pelvic floor. And also her womb was also dragged down. She had a clear up of the endo. She also had some adhesions. Which can cause pain u get them after ops. And they can relieve them by ops but which can also cause more.
What hospital did u go to what consultant are you under? And what treatment are they doing for you now? From hearing from others with endo who went to various consultants Hugh o Donnell n dub is the best SNIP but personally if someone doesn't understand or believe your pain get rid of them!!
I have numerous consultants myself I had ovarian cancer 5 years ago when I was 22 so although I don't know exactly wat I'm talking about with endo I sure as hell know bad consultants from good ones and understand pain etc!
My friend was under Dr Derham in Gal Bon Secour he looked after her v well from endo point of view took her friend to go through 5 and have 5 ops for him to put her on coil and pill like dr Derham had already done. SNIP

Hope this helps. Make sure you have a good Gp too.
Emer

My first Gynie was Derham as well in the Bons had three ops with him and changed for my last one. Do you mind me asking are you going to another Gynie?

Enc wrote: »

I am under a gynae oncologist in St James in dub. Dr Gleeson. I had one op under her and they are years ahead of galway. I don't know if she deals with gynae patients I think it is just cancer.

I am also under two other consultants there one is Dr Phelan and don't know other name. One is a endocrinologist and the other is a reproductive specialist or something. I'm not overly fond of them... But they are prob good.. If it was me I would be trying to get to see Dr Hugh. And maybe see if you could see Dr Gleeson.

Im sorry to hear you have gone through so much I have been through four gynies myself, one of them here was so arrogant, he told me the only solution was to have everything removed. I told him he didnt know what he was talking about. Got up and walked out of his office and straight back to my GP she then referred me to Dr. Boyd in the Mater who I found wonderful, he told me that I would need surgery again, but only a myomectomy (spelt wrong) and told me to go back to Dr. Declan Egan here in Galway. Jugding by the way things are going at the moment i will be going back to him again soon.

I was t the gyny today after last months stint in hospital. Today's advice was: Period pain is common and I should get on having a baby soon as it makes endo better...

Lainey89 wrote: »

I was t the gyny today after last months stint in hospital. Today's advice was: Period pain is common and I should get on having a baby soon as it makes endo better...

I cannot believe they are still giving that advice. I was told that over 25 years ago. You need to change your gynie.

Lainey89 wrote: »

Thanks guys. I've just turned 25 and I reckon the Dr. I saw today was at most 5 years older than me. She's not a consultant but she's working under him in the public system. I'm going to make a private appointment at this point tho.

She pretty much said Stage 1 endo wasn't all that bad (which I know from a physical and structural standpoint it isn't) but we all know staging has little to do with pain. I got the impression she was trying to push me into agreeing to go back on the Pill, when I've been on 5 different ones in the past 8 years and feel so much better off it. According to the Dr. having a baby makes the endo settle down, which having talked to my mother you might get a year or so while you don't have any periods but everything comes back at some point.

Has anyone ever walked out of a Drs. office after being told stuff like this? I know how I feel but when medical staff start talking like that there's always the little voice in the back of my head that starts to doubt that how I feel is as bad as it is.

I did walk out of a dr's office a couple of years ago. What part of the country are you in?

Lainey PM sent

ohiknow wrote: »

Ladies, quick question. Do any of you suffer with mid cycle pain. I am crippled with pain in my lower abdomen again. I had my period 2 weeks ago. I have the start of diarrhea now as well. This has been happening a lot. I ended up in A&E last month with the pain and was told it was probably gastroenteritis. Anyone else have this experience?

I have. I figured out it was ovulation pain. It is generally only painful in a sharp way for a day or so with me and manageable with the medication I have for pain. If you are on the pill it could still be that as there is a small percentage of women who still ovulate while on it.

Lainey I hope you are feeling okay and absolutely agree that you should consider expertise elsewhere if you can...makes me so angry when gynaes who you would imagine would have half an idea of the impact of endo are so dismissive of your pain..:mad: Like whatever about a GP but this is someone who should have half a clue about the condition. I actually think its quite frightening that you are more or less being told to get on with it..I bet she wouldnt be so quick to suggest getting on with it if she had to experience what you do. All I can say is try not to let them make you doubt yourself-easier said than done I know but YOU are the expert on your own body not them so make sure you are happy with decisions that are being made

ohiknow yes from what I can gather mid cycle pain can be quite common in endo sufferers. definitely sounds like theres a link to ovulation there from the timelines and pattern you seem to have observed. Also I know that bowel issues seem to be part and parcel of this lovely condition! I know people have been misdiagnosed with ibs when actualy was all connected to endo. Are you under care of gynae team? could be worth keeping little diary of frequency etc and mentioning it at next appointment. Other thing that might or might not be helpful is looking into the endo diet? I was at the information day last weekend and there was a speaker on nutrition and how it can help minimise some of the symptoms for some people. Appears to be very restrictive though.
Anyway Im happy to copy the presentation she gave on the day and send it on if it would be helpful to you or anyone else..just let me know