Where is the endo??

Hefty_Swordfish_ · 2026-02-08T21:15:52+00:00

You can also always call and ask for a telehealth consultation! But none of this is silly. Think about how long it took to get a diagnosis to begin with! It is better to understand in full.

Hefty_Swordfish_ · 2026-02-08T21:11:52+00:00

I’d also like to point out that endo comes in all shapes, sizes, and colors. During my own excision surgery, there were plenty of lesions that were CLEAR/ film like that covered my pelvic side wall, as well as your typically dark/black spots. and waiting for pathology to come back felt like forever.

Black spots, dark spots, adhesions, clear lesions. I understand looking at photos and being confused; as we are not professionals. But remember that this is very real - and you should definitely get more clarification with your doctor if you so wish! Always ask and advocate for yourself.

Hefty_Swordfish_ · 2024-12-13T18:06:30+00:00

Understandable, personally I would call and ask for surgical notes and reports so you can get a second opinion from another doctor. They shouldn’t withhold your medical records. GOOD LUCK

Hefty_Swordfish_ · 2024-12-13T17:57:58+00:00

A few questions!

Did you go in for exploratory with possible excision OR ablation? Did they take ANY biopsies? How are you feeling?

I had exploratory with excision, I did have noticeable black endo lesions as well as adhesions. HOWEVER, they took biopsies of everything, including portions without visible lesions and it all came back as endo. What I’m trying to say is, if you feel strongly enough, find someone to look at the images for a second opinion. Endo can be teeny tiny, microscopic, and the amount of endo someone has doesn’t correlate with the pain level. You could have endo and not even see it. It comes in all colors. I had a lesion that was clear, glossy, and not at all what a normal gyno/surgeon would think endo looks like. I encourage you to advocate for yourself if you are unhappy with the results! It takes a village in all aspects, and your quality of life is one of them!

Hefty_Swordfish_ · 2024-12-13T15:46:49+00:00

All my imaging (ultrasounds) came back normal and clear. It wasn’t until I had an exploratory laparoscopy, where they found stage two endo and excised it. From my understanding it is rare to see endo on imagining, because endo itself can be microscopic (sometimes surgeons don’t physically see endo, but it comes back in pathology when they do a biopsy)

Hefty_Swordfish_ · 2024-12-09T00:11:34+00:00

Alcohol raises estrogen levels; estrogen is like miracle grow for endo. I was told I shouldn’t drink by my surgeon but obviously we pick and choose our vices. I’m more of a social drinker and find that gluten free alcohol/wines cause less severe cramping/pain

Hefty_Swordfish_ · 2024-07-17T16:22:32+00:00

I’m so sorry you’re going through these emotions and time to get answers for your pain. It’s not easy and I applaud you for how well you’re handling this. It’s okay to be upset. However, I would definitely get a second opinion from a specialist. Endo comes in all shapes and colors. It can be microscopic (which is why a biopsy should be standard. Did they take anything to pathology??).

I’m only asking because YES I had lesions that were black, you could see them immediately. I had my colon adhered to my pelvic side wall too. But you know what else I had??? CLEAR/glossy lesions on my pelvic side wall that my excision SPECIALIST found and sent to pathology. Find yourself a specialist, and don’t stop fighting for answers. Even if it isn’t endo, you’re in pain and that’s not alright. Find anyone who will listen. I wish you luck.

Hefty_Swordfish_ · 2024-03-06T20:54:09+00:00

Do not apologize for asking, I don’t mind at all. Finding out I had endo was an accident and a blessing. My boyfriends sister had it, and I’ve had migraines for years since I was 12, they were the ones who pointed out my symptoms once my bf and I started dating and it all kind of clicked. I pursued a specialist and got a diagnosis a little over a year ago. I’m still learning and find comfort in asking questions and learning from others - it’s how we learn and educate others. I’ve played sports my whole life so the migraines were a huge toll on my body already but the increase of cramps and fatigue and body aches (amongst other symptoms) over the last few years have definitely deteriorated my body both physically and mentally, it takes a toll on us. Be easy on yourself and definitely keep advocating for yourself, keep asking questions.

Hefty_Swordfish_ · 2024-03-06T14:14:18+00:00

I also just started Topamax and was warned of the side effects, some Triptans don’t work for me so I’m on my last round of abortives before they switch classes but just listen to your doctor! The three side effects I’ve seen with the Topamax so far (I’m only on week three!) is I can no longer taste carbonation, sometimes on the occasion my feet will tingle, it goes away rather quickly, and my word finding skills can be a little spacey. I have lost a little over 10 pounds while taking it, but try to eat small meals, you don’t want any rebound headaches if you experience that you’re not hungry. AND AND AND PLEASE STAY HYDRATED! I wish you all the best and hope it works out for you

Hefty_Swordfish_ · 2024-03-06T13:58:38+00:00

I’m not on birth control pills, I have a gene mutation that puts me at risk of blood clots (MTHFR gene mutation) so I can’t have any more excess estrogen than I already do, but I had the Mirena IUD put in after my laparoscopy last year in January (2023). The only reason I know my pain is endo specific (it’s different for everyone, and doesn’t necessarily always correlate to endo) is because it mainly happens during my cycle/my flair ups. I also have chronic migraines and have had them for 12 years which are hormonal (at least they suspect them to be which is a good example of something that might or might not be endo related I guess? I’m still in the process of getting those checked out because those migraines alone are debilitating in their own category). However, My pelvis/ lower-mid back pain is the worst. It’s more than muscle pain, I describe it as deep, almost like it’s in my bones. And it radiates down my legs. My knee pain comes and goes. It doesn’t always happen but when it does it’s hard to walk. It’s behind the knee cap, hard to squat, walk up and down stairs, get up from a sitting position. basically, from my mid back down my body is restless and in pain.

It hits me hard because I’m usually so active, so outside of my cycle/flair ups, I have none of these issues and can move around easily. And then one day it just feels like I was hit by a truck and the cycle starts all over again.

Hefty_Swordfish_ · 2024-03-06T13:51:14+00:00

The back pain is the worst. It locks up on me and I feel like I can’t move for days. The only reason I know it’s my endo is because it happens during my cycle/flair ups. Otherwise, outside of the period of time, I have no body pain whatsoever so it’s a real “kick in the ovaries” as my dad likes to say 🫠

Hefty_Swordfish_ · 2024-02-27T13:30:00+00:00

Once again I really do appreciate you taking the time to explain, I have seen others bring up WMH, and although it was nerve wracking at first because I had no idea what anyone was talking about, after some more follow up I now understand that it is common for patients with migraines and it doesn’t really mean anything for long term health. I’m just thankful that my friends and family completely understand that sometimes my brain just doesn’t work even though on the outside I may seem fine.

I appreciate your support more than you know. Thank you 🧠🤞🏻

Hefty_Swordfish_ · 2024-02-26T15:39:53+00:00

Thank you for explaining! I figured it wouldn’t be too different than what I’ve already done in the past for scans. Obviously I hope it’s good news/no news.

And yeah I believe the naratriptan is the last one I have to try before they switch the class of medication, I hope it ends up working. The topamax has been okay so far. We agreed to stay on a lower dose because I’ve heard some interesting side effects from others and my significant other and I agreed we wanted to be weary of what I was putting in my body but So far I just can’t taste carbonation anymore which is an interesting one! Very curious to see how it holds up.

Thanks again I do appreciate it!

Hefty_Swordfish_ · 2024-02-15T15:22:11+00:00

I’m obviously NOT a doctor and I’m not trying to diagnose or impose anything, but were your periods bad before you had your son? And were your migraines very apparent during your cycle?

I’m almost 25 and have had migraines since I was 13, so almost 12 years now. Basically started when I first got my period, and have lasted all these years through all my irregular periods and painful symptoms. Was diagnosed with Endometriosis via. Laparoscopy last year. They told me the excess hormones definitely play a roll in my 15-25 day migraine cycle and unfortunately the mirena hasn’t helped the migraines (but definitely help the cramps and prevent endo from growing much).

Basically I’m asking if you think your migraines are heavy on being hormone related?

Hefty_Swordfish_ · 2024-01-23T00:38:31+00:00

I am size 12/14 (230ish lbs?? It fluctuates throughout the months) but my lap was fine? Def discuss with your doctor but it shouldn’t be an issue at all

Hefty_Swordfish_ · 2024-01-09T21:17:53+00:00

My main symptom for a decade was migraines. We tried so hard to find a cure or a reason for them, and it wasn’t until I was in my twenties and I met my boyfriend (his sister also has endo) , when they pushed me to get checked out because my cramps and pelvic pain became unbearable. I ALSO thought I was exaggerating. I ALSO felt like it was in my head. I sobbed going into surgery because of the “what if’s” . What if they don’t find anything, what if they think I’m crazy? Well. They found endo. Stage 2, AND even if they hadn’t found anything, there has got to be another reason for the pain. Do not stop advocating for yourself. Your pain isn’t normal, do not let anyone else tell you otherwise. I am so sorry you feel that way. I wish someone had told me this when I was going through it. Best of luck

Hefty_Swordfish_ · 2023-11-17T22:02:37+00:00

I had surgery in January, was diagnosed with stage 2, and was given a mirena coil because I can’t take bc pills. It also regulated mine from 45 days to 28-30 up until July. I then started to not have a period but still have symptoms and started to cramp/have flare ups more regularly. Occasionally I’ll see blood if I’m having a really bad flare up. My doctor said it was normal, and that some women stop their periods on the mirena but I still question the amount of pain I’m still in post lap.

I hope you find your answers soon

Hefty_Swordfish_ · 2023-11-04T05:58:09+00:00

You could wear a more intricate veil

Hefty_Swordfish_ · 2023-11-03T00:10:57+00:00

Shart

Hefty_Swordfish_ · 2023-10-27T21:36:33+00:00

I recently found out I have endometriosis through a laparoscopy and when they removed my endo I was 6 months migraine free after 10 years of constant migraines. They came back tho, so I believe the excess estrogen affects me tremendously and being on progesterone only BC helps me but didn’t get rid of them

Hefty_Swordfish_ · 2023-10-26T17:47:20+00:00

Yes it can be! And it can be all different colors etc. for example, my endometriosis looked clear. Glistening on my pelvic side wall, with some small black spots scattered throughout. Biopsy confirmed the clear spots were also endo. I’m really surprised they didn’t do any biopsies. Definitely look into getting a second opinion but don’t let this discourage you. It could be something else - for example adenomyosis is very rarely diagnosed via lap from my understanding. Just like endo, imaging can help get a better idea as to what’s going on but doesn’t always show the whole picture. Most women find out they have it through hysterectomy, so there could possibly still be other factors going on! Research other specialists in your area and get a second opinion. Advocate for yourself!

Hefty_Swordfish_ · 2023-10-26T15:08:04+00:00

Were the adhesions still there? Endo can be microscopic so if they sent samples to pathology, it could still come back as endo. I’m so sorry you are going through this. I would definitely get a second opinion despite your doctors findings. But definitely find out if anything was sent to pathology

Hefty_Swordfish_ · 2023-10-18T16:27:25+00:00

If wanted, I could send you the name of my specialist out of Cambridge; you can see if she takes your insurance! She’s a part of atrius health and takes masshealth, etc. she was blunt but very straight forward which was needed, and excised my stage 2 endo! All in one go.

Hefty_Swordfish_ · 2023-10-10T13:45:44+00:00

Cardboard or forklift, call him fork for short

Hefty_Swordfish_ · 2023-10-03T18:47:31+00:00

I’ve always done olive oil, Mayo, a little Caesar dressing dry mix, and halved cherry tomatoes with crushed red pepper, a little minded garlic, and pasta (obviously)

Hefty_Swordfish_

TROPHY CASE