Hoping we can spark a conversation about this. Here's some background info-

We have been together for about 4 years. She was diagnosed about two years ago with endo. A disease that affects 176 million women, with no cure.

Everyday she deals with crippling pain, fatigue, cramps, anxiety, depression, and more. Getting out of bed is tough. She needs help dressing, showering, eating, and anything that involves standing for more than a few minutes. This drastically changes life.

We currently have a large network of doctors working with us to regain quality of life back as best we can.

She is standing by and I got the keyboard- Willing to talk about any of it! The disease, how it's affecting her, me, us. The treatments we've tried, resources we've explored, repeatedly getting denied by disability. Anything!

Edit: verification (as best I could think of!) http://imgur.com/1BBrsMA

Update: petition to recognize endo as a disability and provide financial support.

Update 2: Lupron alternative- Pine Tree Bark- seems to be a common theme in the convo. Start here- http://www.medicalnewstoday.com/releases/64791.php

Update 3: 12:45am : Have to call it a night. Thanks all, we have had a fun night hanging with y'all. Feel free to keep the questions/comments coming. I'll respond as I can!

Comments: 137 • Responses: 48  • Date: 

poohspiglet13 karma

How old is the woman? When was she diagnosed and how did that come about? Does she have any children or is that out of the question?

Madeanotheraccount314 karma

She is 34. She always had really painful periods. Like dropping to the floor unable to move. However it was written off as painful periods. Until it went from 3-5 days to constant pain.

Started to see a specialist 2 years ago. With endo you can't be 100% without surgery. It was confirmed a year ago after a laparoscopy.

When we first starting dating we were carefree, independent and not wanting kids. Funny how things can change as we age. We don't talk about the subject much cause right now we are strongly focused on the day to day.

poohspiglet7 karma

thanks! Is she on any meds? Is there any history of this in her family?

Madeanotheraccount312 karma

No problem thanks for asking.

Combating the disease is a three fold approach. Surgical, Hormonal, and holistically.

Before the surgery it was just pain medication. Though several really strong hormonal treatments were recommend. (Google: Lupron) She decided against most or these as they had harsh side or little results. (Some we tried and stopped, others through research opted out.)

Currently medications:

Butrans pain patch Vicodin as needed.
Low estrogen birth control (no off week/period) Pine tree bark Vitamin D / E Heating Blanket

Several naturopathic drugs to help with scar tissue and digestion.

I think that's it!

And nope no family history!

poohspiglet6 karma

I hope she feels better! I never knew it could be so debilitating.

Madeanotheraccount34 karma

Thanks! She's happy to be sharing. And yes most women go 8+ years misdiagnosed. And symptoms can range from silent to severe.

jaiex13 karma

I was diagnosed with endometriosis 4 1/2 years ago, after suffering since I was 12, and it blows. Sorry to hear she's in so much pain, I've been there. :(

Has she considered an IUD at all? I was told it was my last resort short of a hysterectomy, and they wouldn't give me one at my age - I'm 23. It's helped curb the pain a LOT. I don't know if she would consider this option or has tried it, but it's worth a shot.

Send her my good vibes! I would pass out on the bathroom floor after throwing up from the sheer pain that I couldn't control even with pain meds. It really, really sucks.

Madeanotheraccount311 karma

Wow. Let's start off by sending love back. It's amazing how impactful it is for her to connect with other endo women. Makes her smile and hopeful.

Sounds like you know the game. Sorry for that. Tell me more about an iud? Not sure we are familiar. And yeah avoid the hysterectomy at all cost. Eeesh!


jaiex5 karma

It's definitely comforting knowing you're not the only one out there suffering! My mom had it as well and endured 7 surgeries for it.

An IUD is an Intrauterine Device. It's a small, usually plastic or metal, T-shaped piece of birth control that goes into your uterus. The most common ones are Mirena [plastic, with hormones, lasts 5 years], and Paragard [copper, no hormones, lasts 11 years]. I am on my last year of Mirena and I never get a period. I do still get cramps, but it is absolutely nothing compared to what I used to go through before. I actually plan to get another one after this one's time ends. I had mine inserted when I was out for my laparoscopy, so I don't know what it feels like, but I've heard it can be painful depending on the person.

As for you, I have to give you props. It's incredibly difficult to watch someone you love going through such anguish, especially when you haven't experienced said pain yourself, but it sounds like you do a wonderful job supporting her. You deserve a medal! I bet she really appreciates you. :)

Madeanotheraccount35 karma

Aahhh yes. We've discussed that with her endo specialist. Haven't tried it yet, as I'm sure you know everything has a test period to verify its success. Currently we have been mitigating pain and pursuing the holistic channel. Could write about that for hours!! Really interesting studies/info

Oh, and thank you very much. I try my best to keep a team mentality. The fact I find her to be amazing and wildly powerful really helps!

pynkgodde552 karma

An iud is a device inserted directly into the uterus through the vagina. It is a form of birth control. Many women use it that have abnormal menstrual cycles as it typically stops the periods. I had mirena for 4 years. I have a typical cycle though. So I'm not much help in that aspect.

Madeanotheraccount31 karma

Thanks you!

MagicRose9 karma

I also have Endo along with PCOS. I recently had an endocrinologist suggest stopping my periods, using birth control, could actually help with the week or longer agony I go through each month. I am seeing a doctor this week, but I was wondering if you had heard of this method? Any thoughts? I have yet to have surgery for my endo and I am 30 years old. I'm worried that will be my next step :/

Madeanotheraccount33 karma

Heya- had to check with her on this one!

She has not had her period since June 2012. This is accomplished through her birth control. While this doesn't seem to have improved her pain levels it's her understanding that it is preventing future endo growth.

Surgery, if done properly can be really helpful. In fact is usually where most women find relief. Sadly not our case.

MagicRose2 karma

Do you mind me asking what BC she uses to keep from having a period? It is my understanding that some hormonal BC is harder on those of us with endo. I was told by a previous doctor to stay way from the implant, but the endocrinologist said she saw no reason why I shouldn't explore that option.

Madeanotheraccount33 karma

Yeah no worries! It's a low estrogen birth control called junel. She landed on this after trying several kinds, and with the endorsement from her endo specialist.

MagicRose2 karma

Thank you so much! I'm trying to do my own research before getting to the doctor's office and the options seem overwhelming. I will be sure to check this one out.

Madeanotheraccount33 karma

She loves google. I find it tends to add to her anxiety and try to stay ahead of her Google binges. Point is- Find a good doctor/s, build a network of friends, check out /r/endo and most importantly breathe!

MagicRose2 karma

I have been part of /r/endo for about a year now! I just moved and left my awesome doctor behind, so I am still in the process of finding good ones. I also moved to an area that has a completely different way of dealing with medical issues. So I am learning. Thank you. :)

Madeanotheraccount34 karma

So awesome. We need to talk more!

I need to check in /r/endo a bit more often. Such a good community.

MagicRose3 karma

Sounds good! I am not huge in /r/endo, but when I need support it helps to go and read other peoples stories and support.

Madeanotheraccount33 karma

Exactly. :)

frothulhu7 karma

No question I just wanted to say that the both of you are awesome people. You for being so supportive to her and her for just living with this awful disease.

I was diagnosed back in November and am currently headed towards the surgery route after I finish Lupron. I hope she never has to do it, its been awful. I saw that she is doing some holistic approaches to her treatment. Has she considered massage for help with the fatigue, anxiety and depression? I'm a bit biased towards it, being a massage therapist myself, but I've got to say that I feel like regular massage has definitely helped with the day to day for myself. I lied, I guess I did have a question!

Keep fighting the good fight you two! I wish you all the best of luck.

Madeanotheraccount32 karma

Heya thanks for sharing. Sending our support right back!

Kudos on enduring Lupron. Have you tried pine tree bark? Early studies in japan show it to have similar effects to Lupron!

Also if it's a laparoscopy/excision don't stress too much. That wasn't the worst and we learned so much. If it's more serious then best wishes, such a tough tough disease.

We could probably both use a massage. She laughed and said she'd go everyday if she could. We have been fighting for disability. That will help a lot as we live in an expensive city on a single income. Also pelvic floor massage was highly recommend.


frothulhu3 karma

Oh man. Lupron has been awful so I would probably pass over the pine tree bark. Right now I'm just looking for something to give me energy that isn't caffeine related. Good luck with getting disability!

Madeanotheraccount31 karma

Sorry to hear about the Lupron. I've heard it can be really rough. Look into the pine tree. It has had no side effects!

And thanks for the support. The fight for disability has been bitter. Lawyers are involved, which seems absurd considering her current state.

There's actually a petition being hosted now to have endo recognized as a disability with social security.



frothulhu1 karma

Oh in that case, I might look into it then! And I signed that petition!

Madeanotheraccount30 karma

I just added this to the top, but wanted to quick pass this to you.

Pine tree and Endo http://www.medicalnewstoday.com/releases/64791.php

georgelovesgene5 karma

Please tell your gf she's in my thoughts. I was diagnosed a yea land a half ago. I will not take pain killers. I have no period through hormonal BC. It's only treating the symptoms and not that well. My next step is medically induced menopause, since a hysterectomy is out due to age.

Madeanotheraccount32 karma

Best of luck and all the power in the world to you. She tried avoiding them, started with Advil and now it's a matter of functioning.

Also tried the pseudo menopause. She reacted poorly!

Seriously. Much love!

georgelovesgene1 karma

On behalf of all sufferers, thank you for being understanding. Seriously. My boyfriend doesn't understand my pain. He actually encouraged me to go to work 2 days after my lap. (We run the business together.) I get through it as best I can.

Madeanotheraccount31 karma

Sorry it's been a tough ride. In fairness it took me a long time of trying and failing before I found HOW to care.

I think men for the most part are wired to fix problems. Seeing a SO in pain invoked a superman syndrome. It's VERY hard for us to deal with not being able to do anything.

Here to help!

Eliyanis3 karma

I've had endometriosis and pcos since I was 13, 24 now! First, smoking pot helps big time, it's not everyone's thing but it helps immensely with pain management even into the next day after I've smoked. I'm not miserable all the tome thanks to smoking as well, it generally has made my life amazingly better. Also, eccederin extra strength is literally the only pain med in pill form to completely ease my pain, and I've tried about everything. Good luck!!!!

Madeanotheraccount35 karma

I'm glad you said this.

I'm also glad about the shift we are seeing in the USA towards an acceptance of cannabis.

She does smoke and it is unquestionably the best medicine. Best. Helps her eat more, squelch anxiety, engage in activities, and mellow the pain.

If it's your thing.

GingerBeardThePirate3 karma

My girlfriend quite possibly has endometriosis she hasn't been diagnosed but has a lot the symptoms and has gone through almost every test for other diseases with similar symptoms. She does have cysts on a kidney that they saw while testing for chrons/celiac/IBS/ and a ton of other things. She racked up medical bills and wants to be tested within a year after paying off her student loans. The only way she functions day to day without pain is by smoking or consuming marijuana. The word needs to be out for those afflicted. It can give you your life back. She's terrified of the diagnosis I think, and I hate when people act like she's a stoner or bullshitting. Going on vacation where there is no medication and watching her succumb to the pain after a couple days is terrible. Not being able to help her is the worst feeling in the world.

Madeanotheraccount31 karma

I can completely related. So many social stigmas behind conditions like this. It weighs heavy.

Stay strong. I know it's tough!

1mg23 karma

No question, just a fellow endo sufferer here. Keep fighting!

For me I was basically asymptomatic until after my surgery and that's when all the chronic pain and nonsense began. I went through Lupron, physical therapy, nerve block shots in my abdomen, hips, and back, a ton of different pain meds that did nothing... Currently on continuous birth control with lots of annoying breakthrough bleeding. It's been 3 years since my surgery and no new cysts so far, but the pain persists. I don't really have any advice to give, just know that I feel your pain and agree that this disease sucks, but the good days are worth it. :)

Madeanotheraccount31 karma

Thanks for stopping in! The women who suffer from this never cease to amaze me. Such a bond. And warrior like strength.

And for those stopping in to learn more- there's a reason for that. Words can't describe what this does!

hybridmonkey3 karma

No question - just wanted to say thanks for doing this!

My endo has become pretty crippling in the last month and my fiance is currently in the same caregiver boat that you are. He enjoyed reading your IAMA! I'm (hopefully) on the path towards surgery and praying it gives me, at least, some temporary relief.

HUGS to you both! Please tell your girlfriend to hang in there - I really hope she finds a treatment that will relieve her pain!

Madeanotheraccount33 karma

Aww man! You just made our nights. So glad to get to participate in such an important discussion!

And feel free to connect with us as needed. Pm if you want to exchange contact info, for real!

We know the ups and downs for sure. It can add weight to the relationship, but honestly wouldn't change it. I've learned so much about myself, adulthood, and most importantly how to care for someone. Truly care.

Keep on Keeping on!

jenlikesanimals3 karma

My wife has endometriosis as well. It's been terrible. We had a baby and during her pregnancy she didn't feel any pain. Now it's back but she does her best to focus on the good stuff around her. It sucks being her spouse and unable to help. I wish y'all well

Madeanotheraccount31 karma

Kudos on the young one there. Sorry to hear it's started to set back in. So many options out there- hopefully some combo will help.

Also props to you. Seriously. I know.

jenlikesanimals1 karma

Thanks. You know my wife never experienced pain until she went in for an unrelated operation. The doctor saw endometriosis, thought it would affect our chance of having a kid and we opted to have it cut out. Turns out that wasn't our main issue and it sent my wife into a tailspin. Probably two years of depression, plus everything she ate made her feel thanksgiving full. We became vegetarians. We worked out. We became gluten free. Notice I say we... Nothing really helped. Luckily we were able to have a kid because that's what started all of this and she's a welcome distraction.

Madeanotheraccount31 karma

Wow thanks. Not a lot of guys out there dealing with. Huge respect.

I also appreciate you explaining how drastic it affects you, and the relationship. I know this well.

We stay at home mostly, we don't have a lot of money, I assume a lot of responsibilities around the house, we've change diets, mode of transportation.... I could go on.

Notice, like you- I said we. Endo affects both!

ScruffyNerfherder1383 karma

No real question here. I just want to say, you are amazing for helping her. I was diagnosed very early on and it has been a total plague on my life. I've lost jobs from being unable to walk from the pain. My husband takes care of me as well during the rough times. I have rheumatoid arthritis as well. Pain management is an everyday conversation and I know how rough it can be. Hugs to you both.

Madeanotheraccount31 karma

Sorry to hear the pain. We can totally relate. She has lost 2 jobs and hasn't worked in 2 years. This doesn't help anyone.

Kudos to your team. Couldn't imagine my tomorrow without her. Sounds like you know that!

Sluttishsleepyeyes2 karma

Hey! Haven't got a question, just wanted to comment and commend you and your efforts to support your wife and inform people of just how serious it is! I officially got diagnosed with Endo last week - after having symptoms and grief and hell for around 10 years! Good luck to you and your wife - hope she can find some treatment that works for her! Stay strong!

Madeanotheraccount32 karma

So sorry to hear. 10 years is a long time. We are wishing you the best!


Heracles262 karma

What are the common symptoms to look out for?

mundabit4 karma

In its early stages, dysmenorrhea (extreamely painful periods) is the main symptom, most women experience menorrhagia (heavy flow, or long periods) too.

If the endo progresses to other stages you may experience deep pelvic pain during sex, urination and defecation. In the later stages pelvic pain can occur 24/7, without any stimulus.

Symptoms generally get worse while having a period, But as I mentioned, in the later stages pain can occur all the time, scarring can sometimes cause amenorrhoea (a lack of periods) but this is rare, and can be a sign of a secondary condition.

Its easily confused with Pelvic Floor Dysfunction and having endo can cause PFD in itself, so often doctors will write your symptoms of as being nothing more than PFD. If you have a family history of endo, or the pain is debilitating, firmly request the laproscopy, its the only way to test for endo.

Madeanotheraccount31 karma

Right on! Thanks for sharing.

TryNstopME0242 karma

It seems like your really involved and committed in this relationship. Have you ever considered that this isn't worth it anymore?

Madeanotheraccount39 karma

Good question.

I fell in love with a beautiful, complex, independent, and bold woman. She still smiles at me everyday.

95% of the time leaving isn't a thought. Really satisfied in the relationship.

3% of the time I get frazzled. Usually I remind myself how I could be in a similar place. How would I behave? Want to be treated? It helps.

2% it's a dark depressing world. I don't want to do anything but leave. Mostly bad arguments, and when she's doing extremely bad and I can't do shit.

parkleswife5 karma

love to you both.

and thanks for your post. i didn't know endometriosis could be so terribly debilitating either. i hope she can find the combination of treatments that really help to make her comfortable and give her peace.

Madeanotheraccount32 karma

Thanks so much!

As long as we are moving forward we feel positive. I didn't know about it.. At all!

synetc2 karma

The key to effective endometriosis treatment is excision of endometriosis lesions through a laparoscopy. If endo remains it can cause problems no matter the remedy. This kind of surgery needs to be done by a gynecologist who specializes in endometriosis and minimally invasive surgery. It is also important to note that many women with endo also have adenomyosis, abnormal endometrial cell growth in the muscular walls of the uterus.

I can relate to this story. I was pretty much disabled by my endo for 2-3 years. I was diagnosed a year and a half ago. My first surgery was total excision of the endo, yet I still had crippling symptoms. Lupron helped a lot, but when the shots ended I was in immediate crippling pain even though I was on BC and hadn't bled a drop in over 7 months. I had constant partial bowel obstructions, severe pain, crippling pelvic, back and leg pain, periodic numbness in my lower extremities, etc, etc.

Finally I found a surgeon who was able to carefully review my records and determined I likely had adenomyosis as well. I am 7 months post partial hysterectomy along with another round of excision and scar tissue removal and I am symptom free. I still have my ovaries and I'm on no meds.

This is a disease that really requires the right doctor. It is possible to get your life back with the right assistance. While endo is incurable it can be manageable.

Madeanotheraccount31 karma

This is all really good information. Thanks for contributing to the conversation. The part that seems most significant is the doctor. It is so important to have at least one if not a team of good, trusting, caring doctors.

So sorry you've had it rough. Best wishes!

synetc1 karma

I also wanted to add, based on some of the things I have read here I would urge you to get a second opinion from another endo specialist. It is concerning that scar tissue was left behind at the first surgery. Scar tissue alone can cause pain and problems, not to mention endometriosis can be underneath the scar tissue, or this could be an indication of another condition like pelvic inflammatory disease, or adenomyosis.

At this point to be having so many symptoms there is either endo left behind, adenomyosis, or another secondary condition. This is not a way to live, and there are answers out there. I live in the Dc/metro area, there are specialists everywhere, and I still drive an hour to get to the best doc for me.

To make the best of a second opinion have all previous records sent over ahead of time especially the surgery report, surgery video if available, and photos. I can't explain how relieved my partner and I felt hearing another specialist discuss what was done during my first surgery, we knew for real we new what the deal was, and what my options were.

Also, this is a tough topic, and my opinion on this is pretty radical. However, I don't feel that this quality of life is worth saving fertility. While I wasn't really considering having children, my endo cinched the deal. My uterus was not healthy, and to me it wasn't worth risking another's life over. Also, my own quality of life was so poor. My boyfriend has a family member who tried for years to have a child and she had severe endo. It was a soul crushing experience, with no quality of life and no success. Her condition got so severe her only option became a total hysterectomy and removal of both ovaries. It ended up being a godsend. She is now painfree living a normal life with her amazing adopted daughter.

I am very close to your girlfriend's age, I am turning 32 in a week. I now have energy after work, I am never sick, I can make plans, I can exercise, I actually feel 32 again. Tylenol is even magical again.

At this point I am thankful for the experience, and happy to be on the other side, and try to pay it forward to women who are trying to get there.

Madeanotheraccount31 karma

Thought I responded to this earlier! We have an appointment with an endo center and have all her records there. Thank you so much for looking out and sharing.

It's inspiring to hear your recovery. Right now that seems so far away!

GorillaBallet2 karma

What is your sex life like? Or can there realistically be one given her pain and discomfort?

Madeanotheraccount33 karma

Thanks for asking. Really difficult question.

Currently our sex life is near nothing. Beside it being excruciatingly painful she seldom even feels anything less than awful. Thus it's not a priority for her.

For me- this is one of the toughest challenges in dealing with her condition. I have a high libido and often feel very frustrated. She understands, and wishes it were different. I try to understand too.

Milo00071 karma

Have you ever discussed having a monogam-ish relationship? Obviously you are very supportive of each other, and have a very caring relationship. It must also be an atypical relationship as you aren't able to be sexually intimate, which can bring on a lot of problems as well. I'm of the mind that a relationship is what you decide it to be, which could allow it to be semi-open if you both agreed to it. Has it ever come up?

Madeanotheraccount31 karma

Kinda funny how things work out. I am probably more the monogamous one in the relationship. With that said we do have conversations from time to and I think all options have been discussed at one point or another.

Despite getting really frustrated for the most part I can handle the lack of sex. As long as there is a continued goal towards improvement and action being taken towards that goal. She knows how much this affects me. The dynamic of the relationship has changed in ways. Her appreciation and love is evident in ways that uniquely scratches that intimacy itch that usually come from sex.

Herringgull2 karma


Madeanotheraccount31 karma

You made my morning. Thank you for the kind words!!

And best of luck.

lilyaqha2 karma

Sorry to hear. I know, I had it for 11 years before being diagnosed. The "tut tut, you have your period" pissed me off like mad. The final straw was when I had vaso vagal syncope at work. I thought I was dying at that point, and nobody cared/would help me. They caught it, finally, because I found a different doctor. She removed lesions on my intestines, diaphragm, abdominal wall, everywhere! Along with a 7" cyst and my ovary, because scar tissue blocked it.

My ? is does your girlfriend have any autoimmune diseases? 15 years later, I now have thyroid problems.

Madeanotheraccount31 karma

The biggest takeaway from this thread is second and third opinions. We are headed to the boston endo center for just that soon.

And no, not yet. It's something we track through blood work very regularly.

Doing better I hope?

faithlessdisciple1 karma

I just wanted to stop by too-fellow sufferer. It nearly killed me. It had twisted up my right ureter and that kidney was hydronephrotic. Ie: not draining at all and full of black, infected pee. The pain was horrendous but I just put up with it because I'd also been diagnosed with cystic ovaries and fibroids. Til the night the pain woke me at 3 am. It was like a hot baling hook in my side being twisted. If I had not gone to hospital and had a stent put in I'd be dead. Endo is a scarey bitch of a thing. I have bi polar too so my hormone options are : Mirena and Mirena. I've had a cin 3 tumor LEEP removed from my cervix. If the endo comes back, it's bye bye girly bits.

Madeanotheraccount31 karma

Wow. My heart goes out to you. I can't imagine but know you must be so strong to endure. Hopefully things start to improve for the better.

She appreciates the support from fellow endo women. (And all the great questions!)

Thanks for taking the time to connect!

faithlessdisciple1 karma

I didn't know there was an /r/endo. May have to swing by. I mod over at /r/bipolar. It helps to help others get by, hey? My relationship was nearly ended in the two years it took for the cysts etc to get to that point. Or at least : two years from the lemon sized cyst being found. I was angry and hurt EVERY MONTH because my guy had an easy way to help end the pain: get me pregnant. He's ten years younger than me. He was 22 at the time and trying to get a degree at a uni three hours away. I literally blamed him for the pain. I was not diagnosed bi polar yet so add the extremes that come with that into the hormone mix ...and you start to see that my guy is stubborn in the best way. He's still here, we have a 4 yr old girl( and my 15 yr old girl/woman/child) together now and life is pretty stable right now. I was so lucky that night. The region's top urologist and gynaecologist were both in the hospital for other consults. I probably would have been sent home AGAIN if they hadn't ordered lots of scans etc and found what they did.

Madeanotheraccount31 karma

I was so glad to hear of that great stubbornness!

liarsandmonsters1 karma

Good morning from the UK.

I am a 19f who suffers with endo. Both I and my partner have a lot of decisions to make and it's getting us down. He is unbelievably supportive like yourself and comforts me any way he can. I guess I am asking:

  1. Has your other half struggled with dealing with the emotional side of things!? Sometimes I can get severely down about my condition and I don't know how to deal with it.

  2. How do you cope? Sometimes I know I can take my grumpiness with my broken womb(as we call it) out on him and I don't mean to, he seems to cope really well but as I said we have lots of decisions to make and he seems so calm.

Many thanks for doing this, need to get awareness up !

Madeanotheraccount31 karma

Both of these are the types of questions I was hoping to get into.

I am at work and want her to around so I can respond with a really good reply.

Check back, cheers!

liarsandmonsters2 karma

Okay, hope to hear from you later :-)

Madeanotheraccount32 karma

Checking back in!

How does she deal emotionally? Terribly. A once bold, social, defiantly independent woman is now caged inside and in need of help daily. It's crushed her. She has a psychologist she sees from time to time, though we are far more focused on her specialist, a new endo center in Boston, her homeopathic doctor, and pain specialist.

We are slowly getting to a better place. With all that she smiles everyday. I make her somedays, others she's in decent enough spirits despite it all.

How do I cope? I think that's a two part answer. First off I think my personality just happens to fit. I'm unshakably optimistic, Buddhist like patient, energetic, hardworking, creative and driven. Kinda a good toolbox in this case.

Secondly, I don't know. The first part might be bullshit. Most days it feels easy, with not a thought. But somedays it's much tougher and I truthfully question. Everything.

She knows this.

liarsandmonsters1 karma

Firstly thank you for the great reply, and doing the AMA. You are a great man for not only sticking by your SO but raising awareness for the condition

I have the upmost sympathy for her, since I have had the condition I have developed a small fear of leaving the house and struggle to do so without someone with me. It's a horrible condition that seriously affects not only your physical needs but sometimes the mentality of a sufferer needs some care.

I think your SO,is mighty lucky to have your Buddhist like optimism. Is there anything in particular that you do when your partner has a really bad series of pain/bleeding etc?

Madeanotheraccount31 karma

Awww too kind. Thank you so much. I am happy to be a part of this community and social media is powerful.

Her pain is pretty constant. I'm going to reveal my toolbox.

If its bad for her, or i can see it's getting bad I distract her. In this order.

Check her medication app (does she need another pill?!)

Heating pad Massage Vaporizer

DIY projects- mostly ones that can be done in bed.

/r/standup and Devour.com usually have laughs.

I'll spark a good conversation, even I'm the only one talking..

Movies / TV

A few of her favorite iPhone/iPad games

If that doesn't work I'll get weird and creative. I think that's about it!


GTBlues1 karma

I have endometriosis too. I was told I would find it difficult to conceive naturally but that (ironically) the disease should be much less severe after I had had a baby. I was very lucky and managed to conceive naturally after all and it was true that the symptoms eased by about 80% after having a baby. It's now manageable with painkillers and I can live a normal life again. I wish I had some practical or helpful advice but I hope you don't lose hope because it can get better. My worst symptom was uncontrollable pain and vomiting. It was hard to hold down a job as I had so much time off sick. But finding the right painkiller made a huge difference to me. I use solpadeine http://www.chemistdirect.co.uk/solpadeine-plus-soluble-tablets/prd-gub?utm_source=google&utm_medium=cpc&utm_term=&utm_campaign=Brand%20|%20PLA&utm_content=sRxW8sVnY|dc_pcrid_24645831011 that disolve in water and they're literally the only ones that can control the pain. You're only supposed to take them for 3 days at a time because they can cause addiction - which I don't really understand because all they do for me is take the pain away, but in any case I only need them for 3 days each month. I hope it gets better for her and anyone else affected by this disease. Good luck for the future.

Madeanotheraccount31 karma

Thank you for taking the time to share your experience. I have heard that pregnancy can help with the pain. Though don't think we are looking into quite yet. ;)

Also thanks for the info on the pain med. I will let her know when I get home from work.

Airgas20141 karma

I'd say 4 years is enough to know if it's permanent or not. Unless you explicitly don't want a child, I don't see why you wouldn't want to go this route.

I say this knowing how completely judgmental I sound and how it isn't any of my business, I just can't wrap my head around why you wouldn't go this route if it was confirmed or at least a good chance to greatly reduce her pain.

Madeanotheraccount31 karma

No worries on judgement. I totally understand the thought process.

So why no hysterectomy yet?

She was only 100% diagnosed a year or so ago. And each possible solution takes 3 months to really verify it's efficiency. We have made progress, just not enough.

The next surgery she might need would be really significant. A hysterectomy would be the just the beginning as all of the scar tissue would need to be removed as well.
Her doctors strongly recommend holding off as long as possible. And honestly, we aren't ready to lose the option for kids.


IndieGal_601 karma

Bey...I know I'm late to the party, but have you guys ever heard of microscopic endo???

Madeanotheraccount31 karma

I have not heard of this. Any good links to start?

thatg33kgirl1 karma

Hi there. Current endo sufferer here, was diagnosed myself a few years ago although I'm sure like her she's had to suffer most of her post pubescent life with it.

My question is how long ago was her lap? Were they not able to remove it all? I know she's young (30 here myself) but if you aren't considering having children, has she thought about getting a hysterectomy? I know if I were at the point where she is, I would seriously be considering it. Actually, my husband and I are awaiting a diagnosis from another medical issue I'm having, so we're also in the wait and see.

Also, I read through the comments, might I suggest vaping or consuming instead of smoking. It is much easier on my lungs! :D

ItsHollyAgain2 karma

Fellow endo sufferer here. I'm 31 (was diagnosed when I was 17). I've had a few laps and they try to remove as much as they can. The problem is that if they leave even a microscopic amount, it can continue to grow. Also, many doctors try to discourage or will flat out refuse hysterectomies. I had doctors pushing them on me, and when i wasn't sure what i wanted, I said no to it. Now I'm leaning towards it b/c it's just not worth it anymore and due to my other chronic health issues (mainly lupus and RA) I have no desire to go off of most of my meds to attempt to conceive, and likely can't anyway.

Madeanotheraccount32 karma

Thanks for sharing your experience. Best wishes!!

Madeanotheraccount32 karma

Hi there. Her lap was over a year ago. All active endo was removed through excision. Unfortunately going untreated for so long left a large mass of scar tissue on her uterus and left ovary. Currently we are focused on this.

And we vape. :)

thatg33kgirl2 karma

Thanks for responding, I'm so sorry she had so much scar tissue! My lap was about a year ago as well, and although they removed all they could (and apparently moved things around too?) my periods are still painful. Is she on BC, and if so has she considered going on a 3 month cycle kind? I just went on one, and although my period still sucked, it was only once every 3 months. I also don't recommend going on ANY other kind of hormone meds during this time- I was also on Spiro and it ended up making a very unpleasant 3 week long ordeal.

Best of luck to you guys!

Madeanotheraccount32 karma

Thanks for caring! She is in bc. A low estrogen brand called junel. Per her endo specialist insight she has not had her period in over two years.

Most likely the scar tissue is the biggest culprit of the constant pain.

theonusta1 karma

I would caution against assuming that a lack of period means a lack of developing endo lesions. Scarring of the uterus is the result of removing the lesions, not a direct result of the end lesions themselves.

I say this because after my first lap, they started me on a similar thing. No periods for a year, but the pain came back at about 6 months, and worsened after that to the point of being on constant pain killers by about 9 months.

When we got back into surgery, my endo had ballooned and done a good bit of damage to my organs.

A lot of doctors think that no periods means no endo and that's just not the case. You have to deal with the estrogen. With aggressive cases, even a little estrogen can give it a foothold.

Also, if you are worried about scar tissue, there are massage techniques that help your body break it up and process scar tissue. I would recommend finding a good therapeutic massage therapist. They did wonders for me following my second lap. :)

Madeanotheraccount31 karma

After this thread we are working with the boston endo center for second opinions and additional insight. (In addition to the strong team we currently have).

And I will pass on the massage info. She has been working with a pelvic floor therapist. Curious if it crosses into that.

sharkhotel0 karma

What college should I go to? I am currently deciding between University of Virginia and University of Richmond.

Madeanotheraccount32 karma

Richmond Spiders! Are you serious?!

DangerousLogic0 karma

What naturopathic treatments have you found to work?

Fun story from my general medicine class: one of my teachers had a patient who would get a severe nose bleed whenever she had her period. Found endometrial tissue all the way up in her sinus cavity!

Madeanotheraccount31 karma

I will have to get back to you with a list once I get home from work.

And that is crazy!


Juliet11-3 karma


mundabit3 karma

A hysterectomy is a drastic, dangerous and expensive procedure, If there are still options available doctors wouldn't even consider it.

A hysterectomy also doesn't cure endo, the scarring can be all through the abdominal cavity on unrelated organs such as the kidneys and bowel. While a total hysterectomy will stop new scars developing (OP is already doing this with Hormonal medication) but unless the existing scars can be ablated (OP has already had a lap, so they have removed what they can) then the pain will still effect her life.

Madeanotheraccount31 karma


There are still many things left to try and we always start least impactful to most. So the hysterectomy is really a last resort.

And to add insight- she can do anything. It's how long it takes and how much pain she has to endure.

Imagine a world with a 5-10 minute window for standing up!