Endometriosis Thread 3: Place for EndoWarriors

[HMisabelle]

Awww. Hugs, MisCalculus.

[mustard]

Hi
Sinu naka experience nagspotting ng color  dark brown habang naka depo... nangyayari kasi sakin yon ngayon e...  normal po ba yon?

[crzysxycl]

^ako sis ganyan. 5 months ako naka depo and lagi may spotting. sabi ng dati ko OB sa umpisa lang daw pero lagi namang meron kaya siguro pinastop nya na.

[mustard]

After mo magstop [textspeak!] nalang ang medication mo??

Sis ok lang ba kung dalawang besis mag painject ng gnrh? Dalawa na kasi Ang cyst ko... both ovary ko meron na
Yong sa right 4. Something.... sa  left  2. Something ??

[crzysxycl]

^paanong dalawang beses sis? ang alam ko kasi ang isang shot ng gnrh good for 6 months na, yun ang sabi ng dati kong OB. nung nag stop ako ng depo sis pinag althea nalang ako, naka 2 packs ako nito.

[mustard]

Last year kasi sis..nag gnrh na ako para sa left ovary ko .. kaya lang  this year nagkaroon ng cyst tong right ovary ko na almost 5cm, kaya kaylangan ko daw mag gnrh ulit.....

Tapos sis... normal ba sating may endo. minsan nagblebleed tayo after intercourse?
Minsan kasi ganun ako , parang may natatamaan sa loob na masakit.....then may bleed pero mahina tapos mawawala din after..

[crzysxycl]

^ay ganun ba sis. kung naka 6 months na siguro sis since nung last shot mo ng gnrh baka pwede na. pero kung ako siguro sis papasecond opinion ako. re bleeding pag nag intercourse, nabasa ko normal yun pero ako sis never ko naexperience.

[mustard]

Ganun ba sis.... sige magpapasecond opinion ako... naka depo pa kasi ako e after 6 shots gnrh na... ang bigat sa bulsa...

Minsan lang naman mangyari [textspeak!] bleeding kapag sobrang excited si hubby... kapag nasasagad nya ayon nagkakableed...
Nakalimutan ko din kasi consult sa OB ko...

Kamusta kana sis? May improvement naba sayo?

[crzysxycl]

^preggy ako ngayon sis kaya hindi ko napapamonitor yung endo ko. pero so far wala naman pain. nung last ultrasound ko bago ako mapreggy, wala na yung left cyst ko, sa right nalang. oo sis mahal talaga ng gnrh, mas ok kung pasecond opinion ka rin.

[bebe0421]

Hello mga sis! Silent reader lang ako before but I'd like to share my journey baka makatulong sa iba to make informed decisions. I hope okay lang kasi medyo mahaba-haba ito. By the way, I'm 32 years old and single/iar. No kids pa. Menstrual cramps was experienced every menses; heavy bleeder din (I can go through 5 packs of overnight/big pads during period) but REGULAR.

September 2015, I was admitted due to asthma - check up ko lang ito dapat sa gastro ko, thinking my GERD is acting up again. Hindi na ako pinayagan lumabas sa hospital diretso na admission kasi I complained that nagsusuka ako and masakit na masakit ang tyan. My doc ordered total abdominal ultrasound wherein okay naman lahat ng organs but may nakita na mass - ovarian origin. Medyo malaki na sya kaya sobrang paranoid ako to the max, after ako madischarge, punta ako sa OB-GYN (first time ko) and I was instructed to have transR/transV during my period para raw ma-check mabuti baka lang kasi hormonal daw.

Come October 2015, nagpatransV na ako (hindi na ako virgin ;p). Ayun na nga, mas malaki na sya ng 2cm (TAbU = around 6cm; TransV = 8cm) and confirmed na endometrioma plus meron pa nakita sa uterus, sabi 2 cm. intramural/submucousal myoma but per impression of the sonologist adenomyoma sya and not uterine fibroid (myoma).  So eto na, relax pa ako nyan but the sonologist was upfront saying that operation ang cure yan, kahit mag-gamot ako ooperahan pa rin daw sila.
Mega dasal na ako. Punta na ako simbahan palagi dahil takot nga ako sa opera. Besides that kaka-admit ko lang and ang laki rin ng nagastos ko. Tapos gastos na naman. Sabay pa ng stress sa office na hindi na ako halos umuuwi sa bahay namin sa dami ng work, abusong abuso ko talaga katawan ko.

November 2015, I went again to my OB GYN and then request ulit ultrasound kasi baka lumiit or baka may miracle na wala na. Sad to say meron pa rin and medyo lumaki sya ng 1cm. So parang everytime ako nagkakamenses, lumalaki sya or nag rerespond sya. Nakakaasar. Eto na, yung period ko ng November sobrang grabeng painful, though sanay ako sa cramps but this time nginunguya ko na talaga yung Midol every 3 hours. Pain is shooting through my rectum, pati paa ko masakit as in. Hindi ko alam kung psychological or physiological but I swear ever since I got these symptoms hindi na ako naging 100% ng sarili ko.

December 2015 came and I've visited another OB-GYN, kasi yung una ko OB-GYN nag-iinsist ng operahin na right away (tama naman sya) but this is not the suggestion I was willing to hear. New OB-GYN worked with me, meaning Luprolex (GnRH) muna ako for 3 months until such time na willing na ako pa-opera. She made me understood the risks/side effects. I thought hindi ganon ka severe but on my 2nd month injection, yun na ang kalbaryo. OA ang hot flashes, mood changes and constant pain everywhere. Level na ayaw mo na tumayo sa higaan ang gusto mo na lang umiyak ng umiyak.
Asar na asar ako sa sarili ko while on Luprolex kasi parang lantay na ako talaga. Lumaki pa tummy ko, para akong buntis. Feeling ko nga ang malas ko kasi parang ramdam ko lahat ng side effects. But tinapos ko pa rin up until my last injection (sobrang mahal din nya! ayaw ko na as in). 

By March 2016, tapos na yun Luprolex, ordered na naman for TransV (1st week), good news is lumiit endometrioma around 6cm na lang sya but yung nasa uterus, steady lang. Parang hindi natinag ng injection. This is the time my OB GYN insisted that I undergo operation na, kasi lalaki na naman yan dahil wala na luprolex. Sabi ko i-defer ko muna ng 1 month kasi marami pa ako gagawin sa office, yada yada yada. Parang badtrip na doctor ko kasi lagi ako hingi extension. Anyway, wala naman sya nagawa though I have started to plan and schedule my operation, laparoscopy + hysterscopy sya originally and I made appointment na with the surgeon (gusto rin ng surgeon right away na as in dun sa week na nagmeet kami (something about the lining of my endometrium and status of my uterus, this is before Holy Week) but SOBRANG KULIT KO sabi ko April na. Please let this be a lesson for all of us - when the doc says right away, just follow. Grabe ako sa kulit. Pain is not worth it sobra.

So I was put on Qlaira para hindi ako magkaperiod but after ilang tablets, eto na ang sakit na ng back ko, bleeding na which I thought normal kasi tapos na luprolex. Then Holy Week, para rin ako nagpepenetensya but I did not let my family know kasi kasalanan ko to eh, ayaw ko pa opera. By Sunday, eto na nag-ttext na ako sa doctor to consider me for operation na kasi pain is unbearable na - nag rradiate na sya sa feet and up to my shoulders while bleeding. Kahit anong inumin ko pain reliever (celebrex/alaxan/midol) grabe wala na tumatalab - first time ko makaramdam ng pain sa buong katawan as in dati kasi localized lang, parang may flu ka ng 10x.

Ending ko, April 1, emergency surgery - medyo delayed kasi I was hoping na mag reply yung doc ko for laparoscopic surgery. I forgot naka-travel pala sya that's why sabi nya before Holy Week ang operation sana namin. Laparotomy surgery ako kasi nag leak na sya and I have big ugly scar na ngayon. Biopsy affirmed the endometrioma and adenomyoma, wala na ako right ovary, fallopian tube and yun uterus ko medyo parang na-CS daw kasi hinanap pa yun adenomyoma. But the OB GYN was able to clean daw some scar tissues na andun. So dapat panatag na ako nyan diba.

Wrong.

I was put on Visanne by May, after my menses. Tarag*s na visanne na yan, hindi ako makatulog and the freaking head aches. Promise, ako yung type na hindi agad sumasakit ang ulo kahit maraming work/stress pa yan. Pero sa Visanne grabe kulang na lang inutog ko ulo ko sa pader. I was so depressed nag joke ako sa bf ko na bilhan ako ng baril para matapos na lahat ng nararamdaman ko. Pinapalitan ko sa OB GYN ko, so ngayon naman Cerazette ang tinetake which is lower dosage daw ng Visanne, ayaw nga ni Doc umalis ako sa Visanne but I told her hindi ko na talaga kaya.

Kay Cerazette, suka naman ako ng suka. Tsaka bleed ako ng bleed, as of this writing I'm still bleeding (10 days na). Isip ko baka period time ko na and hindi kaya isupress ng Cerazette. Sabi ng doc ko, tiisin ko raw, give it 3 months then check daw ulit.

So eto na nga, tiis lang kay cerazette but last week sobrang suka ako ng suka, I lost 3 kls. (good news, hehe.) but syempre alarming ng kay boyfriend so punta ako gastro ulit. Abdominal Ultrasound na naman daw, along with other tests. Turns out MERON NA NAMAN NEW GROWTH SA UTERUS, 2 cm, intramural na naman (aka adenomyoma). Gusto ko na magwala grabe. Hinang hina na ako. When will this end? I'm so sorry ang haba ng kwento ko but I don't have anyone to share this with. My mom felt that this is my own doing (duh. genes). My friends are all mommies, medyo hirap silang ma-gets why I'm spending a lot of money and yet I'm still sick. Baka rin takot sila mahawaan ng infertility ko. LOL.
 
Also during my time with Luprolex, I felt a lump in my right breast too. Sobrang sakit din nya. - paranoid na naman lola nyo kasi aunts ko from both sides either died of breast cancer or ovarian/uterine cancers, pina-check ko and breast ultrasound later - solid nodule/mass bilateral (both breasts) but around 1 cm lang (birads 2). After 6 months, breast US ulit. Baka raw hormonal, sana nga. Kasi if I'm dealing with this and my repro issues, grabe nakakapang hina ng loob.

Sorry for the wall of text. Sobrang haba ng kwento ko. Goodluck and God bless to us all.

[HMisabelle]

awww sis bebe0421. praying that you can get through this soon. God bless you.

[crzysxycl]

^^Aww, grabe experience mo sis. Kainis tong endo, ako rin noon wala naman kakaibang symptom tapos nung nakita 4cm na yung sa right ko then almost 3cm naman sa left. Sis, since in a relationship ka naman, hindi ba sinuggest ng OB mo na magbuntis ka?

[bebe0421]

Thanks for hearing my story HMisabelle. God bless you too.

Hi sis crzysxycl - it was discussed po after my operation to get pregnant asap after visanne/cerazette however the doc told me na mapapahinga lang ako ng 9 months and this is not the cure for adenomyosis - hysterectomy lang daw. she also mentioned that it might be difficult for me to get pregnant so may mga options din sya nasabi. She also made me aware that adenomyomas can also cause complications in pregnancy (kapag malaki na yata masyado). Gagawin ko talagang career yun pregnancy, sabi nga ni doc, kahit isa lang daw. congrats to your pregnancy, lumakas loob ko sayo I hope mawala na rin yun endo mo para talagang happy na.

[bebe0421]

By the way po pala, it is not my intention to scare  the pretty ladies here. Reviewing my post, parang horror ang sotry ko (sorry passionate lang sa pagkwento). I know both can be managed and controlled. Besides, we have a lot of options now hindi tulad 20 years ago. There are lessons learned for sure, sa akin is to always listen to your body and make proactive decisions to protect your health. I thought ang sakit ko lang ay asthma and GERD, and I've listened to others (mostly old people) na normal lang ang prolonged and heavy bleeding tapos the debilitating cramps is part of your menstruation. In hindsight, dapat noon pa ako nagpacheck baka naayos ko pa ng mas maaga because alam ko these symptoms were present since teenager ako. Anyway, we'll just keep on keeping on. I'll include you all in my prayers - sana maging endo/adeno free na tayo soon.

[crzysxycl]

^ay ang nega ng OB mo sis, hehe. kung sabagay, baka nagpapakatotoo lang sya. yes, may mga doctors talaga sinasabi mahirapan mag conceive pag may endo, lalo na yung gusto ipaopera agad ng patient. buti nalang OB ko never sinabi yun, i even got pregnant after 3 months workup with her. pero kasi kung treatment ang gagawin tapos gusto mapreggy, madedelay pa pagbubuntis so gaya ng OB ko, nagfocus sya sa pag conceive kasi as long as nagrerespond naman ovaries mo sa fertility meds, malaki chance mapreggy. also, yung sinabi ng OB mo na mapapahinga ka lang ng 9 months, pwede pa rin mawala endo nun since hindi nagkakamens. kahit naman din kasi ipaopera ang endo pwede rin bumalik diba. mas ok na mabuntis, may little bundle of joy ka na, pwede pa mawala endo mo. baka sakali lang, hehe. re adenomyosis, nabasa ko lang na kapag meron nito at may plan to have kids, do it asap daw since hysterectomy nga lang or menopause ang gamot. ewan ko ba saan galing tong mga sakit na to. ano pala meds mo ngayon sis?

[MisCalculus]

Sis crzysxy, musta na kayo ni bebe?

Thanks sis HMIsabelle

Sis Bebe and Sis Mustard, goodluck sa inyo, update nyo lang kami dito. Kaya natin 'to mga girls

Hi po,

I am new to this site. Gusto ko pong malaman kung sino na po sa inyo tapos na magtake ng visanne for 3 months? and kelan po nagkaron ng menstruation? I just end using it last June 3. Until now wala pa din pong mense.

Thanks po sa inyo.

Kakastop ko lang ng Visanne last May 28 to be exact after a year of taking it (hayyy).
Last June 25 bumalik na agad yung period ko. Normal on the 1st day, heavy on the 2nd, pero bilang ako ay may endo gaya ng lahat dito (hehe), nagstop na uli on the 3rd day.
Not naman abrupt na stop pero ang laki ng difference ng flow from the 2nd day. Ganun na yung the usual nangyayari sa kin even before i was diagnosed with Endomet. So i guess, the symptoms are back pero sa ngayon wala ako plan to take any meds para dito. 1 pain reliever pa lang so far kasi di ko na kinaya yung sakit ng endo ko eh

[crzysxycl]

^hi sis! musta ka na? mag 36 weeks na kami ni bebe, konting tiis nalang hehe.

[MisCalculus]

^im ok naman so far, kahit walang gamot sa endo, keri ko na uli. I am praying hard talaga na mawala na lang sila ng kusa, yung magsawa na yung mga cyst na yan sa katawan ko. hehe!

I'm happy for you. I-claim na natin na everything will be ok paglabas ni bebe

[crzysxycl]

^Thank you sis! Nice to know you're doing ok.. After I give birth, plan ko rin mag change ng diet, baka sakali magwork for my endo and myoma.

[mustard]

Hi crzysxycl,
Normal delivery kaba kung sakali?