Endo updates..... how are you travelling?

[dusty]

i thought i would bump this thread and see how people are traveling?

during my last IVF cycle the FS found a spot of endo in/on one of my follicles but we have decided not to treat me for endo as i produced a few good eggs and the treatment may not work anyway or make any difference to the quality of the eggs. i personally believe the trauma of surgery to the ovaries takes more time to heal which i don't want to wait to happen.

how are you going?

[Laranna]

A few months ago I thought my endo was starting to flare up again because it seemed my symptoms were returning...and then out of the blue I fell pregnant! Haven't noticed any trouble yet (apart from still having a cyst on my ovary) so hopefully the endo now stays away and hopefully my tube(s) remain clear enough in the future for baby number 2 (yes DP is already planning it!!).

[chris]

Hi ladie
Just thought I would check in and see how everyone is.
Mumsword :How are going these days after your big opp??
I am going to have a Hysteroscopy/Laparoscopy with in the next 8 weeks, I am a bit worried as he is going to lazer some of the endo.
It is mainly to check if I have Ashermans Syndrome plus he will do what he can there also. So I expect to be very sore and sorry for myself afterwards.
But I hope it will help pain wise in the long run as I am always in pain its like having period pain all the time.

Have a Merry Christmas!!
Take Care
Chris

[nic]

Chris, goodluck with your upcoming op, wishing you all the best with it.

Nic

[chris]

Thanks Nic
I hope it all goes smoothly!!
Have a merry christmas Nic
cheers
Chris

[dusty]

hey chris, GL with your op and i hope you can get the pain relief you need. can i ask what is asherman's syndrome? xx

[chris]

Hi Dusty
Ashermans Syndrome is damage in the uterus. It can happen after a C-section, D&C, or a infection in the uterus. There is all different grades of it from a few patches of scar tissue to the whold uterus being stuck together like a pancake. It can be very painful to no pain at all. If the uterus is blocked with ashermans and you have edometrial tissue in the uterus it can cause you to bleed internaly as when you have AF the blood has not exit so it goes out the tubes (I had this for 9 months) and this causes more endometriosis to grow.

I was diagnosed with endo 17 years ago and I had a m/c in 06 and had to have a D&C and got Ashermans.

During this op the Dr will try to cut away some of the minor Ashermans and he will treat some of the endo aswell. As these days I am in pain all the time.

I don't mind telling you what Ashermans plus if you google it you will get a better explanation of it and there is a write up about it in a UK paper that has a few case stories as well.

Merry christmas!!!

Chris

[cassiopeia]

Diagnosed: September 2006

Symptomatic since: Pain started 1999, was referred for painful periods put on the pill experienced minimal relief. Pains worsened as years went on and became more GI. Could not eat without pain, painful bowel movements, blood in stool in and out of ER for morpheine pain relief for severe stomach pain usually occuring after eating. Gas pains and bloating and period pain normally starting 2-3 days before period and had me doubled ove rthe entire time, alternating diarrohea and constiapation and fatigue.

Surgeries: 3 gatroscopies, 1 colonoscopy, 1 diagnostic lap & hysteroscopy September 06, Bowel resection (laparotomy) May 29th 07 and excision

Areas of endo found: small and large bowel, 40cm of small bowel removed, pouch of douglas, ovaries, tubes, bladder and appendix.

Fertility: No guarantess but Fingers crossed!!!

Treatments: Been on bc pill, currently on Synarel (GnRH)

Medical help: Been diagnosed by doctors for celiacs, lactose intolerance, ulcers, IBS appendicitis and in fact I had none of the above Go Figure!!! Damn doctors. Was in the ER 6 times in 6months for debilitating pain had to be carried in and put on morphiene, sent home being told i had gastroenteritits on all occasions. Finally Referred myself to a gynae who did my diagnostic lap in sept 06 which got the ball rolling.

Outlook now: am minus some bowel but my surgeons have said that my endo was so extensive and in the top 10 of the most complicated bowel surgeries they have performed. (at least they earned their money!) I am currently disease free Yay!!

I can't believe it!
Everything you are explaining about the pain, the other diagnosis' is what I have been experiencing, I never thought it would also be related to Endo. I have been tested for ulcers, diagnosed with gastro, self diagnosed myself with lactose intolerance... and have almost constant nausea.
I have only been on here a day but I am learning so much from everyone.
But I haven't introduced my self... I am Cassie am 21 was diagnosed with Endo 1.5 years ago. Had a Laparoscopy & Hysterscopy the Endo was found where my appendix had been removed 10 years ago and under my uterus. Am now being treated with the pill having 3 monthly AF, but my "treatment" is causing more problems as now its causing my cervical cells to grow abnormally, so its back to the gyno on 31st Jan to have a colposcopy. Has anyone had a colposcopy? I have no idea what to expect?

[Mumszword]

Hi Chris

Just saw your message - sorry I have been a bit slack with checking my emails and the forum of late with christmas, new year etc....

I wish you all the very best with your op. I hope its sucessful and pain free and they are able to help with your symptoms... I will be thinking of you - let us know how it all goes.....

I am doing fairly well.... I have a few odd symptoms.... my bladder was involved with the endo and since they removed the endo I have some bladder related pain .... so I think I may have to follow this up?? I have had the occasional abdominal sharp pain but nothing that I can say that definately feels like endo IYKWIM? I am hoping they have got it all with surgery.... but as far as I know the only way they can check if it is re-occuring is to do surgery again? so I think I will play it by ear....

Well I hope everyone else is well and life is treating them good. Keep us posted on how you all are.....

take care and best wishes.....

Mumszword.

[beau_9]

hello again,
Good to hear your doing well after surgery mumszword. just thought i'd give an update too.
I have another appoint with the gynae next month, and i have all fingers crossed i'll get somewhere this time round. I'ts been 13 months of ttc now so i'm hoping this will be a reason for them exploring what it could be (even though endo is suspected) cause i'm sore and getting depressed about all the pain all the time. Not to mention i can't bed that often due to the pain, so that might be a problem conceiving in itself (lol).
My only worry is my gp told me this gynae may want to refer me to another specialist in brisy cause no one where i live is qualified to remove endo, and i'm worried i'll be waiting even longer, but i'm being optomistic and well i guess i'll just have to wait and see..
Ok take care,
bo

[YDI]

hope everyone is doing well... was in hospital for a week about a month ago with a bowel obstruction which is apprently normal after such extensive bowel surgery... Grrrr it was absolute agony to the point that i told my surgeon i would rather die than have that again! he told me that if it didnt heal while i was in there they were going to have to do another bowel resection and i cried and cried.
the following day things started working again but slowly and after 7 days in tehre i was allowed to go home. it was good in that they were all the same nurses from when i was in there last time but hte pain was excruciating i was on so much pain relief i didnt even know my name half hte time.

[jbub]

Hi All

I was diagnosed with endo after a lap in June 07. I have always had painful periods but thought this was normal. In May 05 i started getting pelvic pain mid cycle. my gp sent me for an ultrasound which showed a retroverted uterus but he did not refer me on. I was finally referred to a gyno in May after seeing my (new) GP in tears with pain. At this stage we had been TTC for 6 months but i lied and told them it had been a year as i really wanted to get to the bottom of my probs. I saw the gyno who immediately suspected endo because of my symptoms - painful periods, pain with pooing, pain with intercourse. My surgery in june was basically open me up, see the extensive endo, and stitch me up again. My uterus was stuck to my bowel, ovaries and tubes stuck to my pelvic wall - to quote my specialist i had a 'real mccoy' case of severe endo. Finally 3 months later i had surgery again - this time with 2 gynos and a bowel specialist. The endo came off my bowel really easily so avoided a resection. had my appendix out and everything unstuck and endo removed. All 3 doctors said how happy they were with the surgery.

Started ivf a few weeks ago. Had my day 8 scan yesterday and found i had 5 follicles on my L ovary which are looking quite good. Unfortunately, the scan also showed a 4 cm endometrioma on the right side. I was fairly devastated by this since it is only 3 and a half months since the surgery. We are still going to concentrate on the getting pregnant asap thing and ignore the endo for now. The plan is to have a hysterectomy once i have (hopefully) had my children.

I am really realising that although endo is not life threatening, it is a really devastating disease as far as fertility, quality of life with all the pain etc. It feels like just as you get on top of it it strikes you down again. I am trying to forget about the endo now (with the help of panadol) and try and stay positive for the ivf. It is fantastic to hear about other people's success despite severe endo. It really gives me hope.

Hope you are all doing well.

[YDI]

I dont think ignoring it is a good idea. Choosing to 'wait and see' in regards to hormones and surgery is not the same as ignoring but.
I know a few people that have chosen a 'wait and see' how i went without them, and its worked where they are taking herbs, supplements, using exercise, relaxation techniques, and major diet changes. So if meds and surgery isnt the path you want to take, there is nothing wrong with that, many dont take that path, but you need to be doing something to help your body heal itself.

It varies so much from person to person. Its a risk not to do anything, i guess you need to weight up what matters to you.. Do some research on natural therapies, natural options and diet changes.

I have tried a change of diet which almost always brings great relief of symptoms, endo is an auto-immune disease so foods can often trigger discomfort or associated IBS symptoms.
I personally tried positive thinking, I know other people have also tried yoga and other gentle exercise, massage. Treating endo doesn't have to be all surgery and hormones.

from the extensive research i have done on endo and diet there is a belief that diet can minimise the symptoms of endo and improve overall health.
the endo diet mainfly focuses on recipes which are wheat free, meat free, dairy free, sugar free, and soy free. im not as strict in my diet in cutting out all the above but i do make a concious effort too as before my surgery the above foods definitley aggrivated my symptoms.

[joel's girl]

Thought I'd give a quick update on here too.

My son is now 4 months old, growing very fast and doing great. I'm enjoying being a mum but it doesn't leave much spare time to come on here anymore but I do often think of you ladies and wonder how you are going.

On the endo front - it is slowly creeping back, ATM I have at least one day a week with moderate pain. There has been a few nights where I have been feeding hamish and doubled over in pain thinking to myself, it use to be hard enough to cope with the pain before bubs came along - if it gets back to the constant 24/7 pain again, I honestly don't know what I'll do.

Good Luck to all awaiting surgery and TTC and congrats to those who have fallen pg since I was on last.

This is the best endo support online IMO !!

[chris]

Hi Mumszword
Yep i agree better get bladder related pain checked out. As for the other sharp pains could it be adheasions that are pulling as I had that kind of pain after a lap and was told that it could be an adbeasion. After a few months it went away so I didn't worry about it, just thought it had stretched and adjusted.

Due to the constant pain I now wait for postman to see if he has letter from hosp telling me the date of opp. I just want this pain to end. I feel so useless as if I do a bit of house work it gets worse from the bending etc .... sorry a little bit of wow is me

Joel's girl : IKWUM as after both of my babies I was OK for a few months and then it started up again getting worse every month. Plus if you are breast feeding it could be the uterus tightening / cramping. I was not able to breastfeed for very long but after birth pains were worse when feeding baby(during and after feed).

Take care
Chris

[desist]

I've only posted here a few times so I'll provide a little history

I'm 23, had period paid since I was 15 and was diagnosed with endo at 22. My periods were very irregular, anywhere from 3-8 weeks apart, were heavy and lasted for up to 7 days.

I had lap surgery in november 2006 although the surgeon was not a specialist. in the 6 months after the surgery, my periods were regular. For the last 6 months they have been 35 days apart, and last for around 5 days.

My main issue since surgery has been the pain - whilst it reduced the days of pain during my period, i have more constant 'general' abdominal pain throughout the month and far more severe pain during 2 days of my period. I have had digestive problems (bloating/constipation/abdominal and bowel pain), dizziness, headachesand lethargy since the surgery.

I became sexually active recently (an unrelated past experience caused me to distrust men but my current partner is wonderful). While I have been somewhat dealing with the period pain by pretending it will go away , the pain during sex in the bowel/rear area (i'm sure you understand!) is frustrating to say the least.

I'm now searching for a decent doctor to see if all symptoms are related and if there's anything more that can be done

[allyally]

Hi desist
If you are looking for endo specialists in brisbane, try Graham Tronc at Brisbane Private Hospital.
Very through and understanding. Absolute champ

[allyally]

post same as above