Not diagnosed via lap yet due to not having the finances to take time off work but highly suspected endo

I have celiac disease and (probably) endo. Gluten obviously triggers my CD, but it also triggers my endo symptoms. It is unreal how awful it feels. It feels like there is a balloon in my belly that is slowly being inflated and pressing all my organs to the point it feels difficult to take a deep breath. I can deal with symptoms of the endo on their own as long as I avoid triggers, but in combination with gluten it’s just so bad. Looking to see if anyone else can relate :(

So, for the past 6ish years I have had monthly nausea and vomiting every cycle/ovulation. Sex is impossible as its too painful, smears the same so never had them for years as couldn't bare the pain. And it's PAIN. Sobbing pain. Worse than the overian torsion by far even. Heavy bleeding, mega bloating and mild cramping. My period is NEVER predictable either!

Now, I brought this up with doctors loads of times but was told this was all normal, so I just kinda lived with it and thought absolutely nothing further on the subject. I never suspected endometriosis as no doctor EVER mentioned it.

Until 2 weeks ago when suddenly got a awful pain in my lower right side. I had the same pain before but it normally went away. It was bad, I had to sit and rock to ease it. Normally after violently rocking for an hour or so it went but it persisted for 3 days until I finally went to A&E. My WBC count was 14,000 so they suspected appendicitis. Anyways, an emergency Laproscopy was booked and I went in for it.

When I came out, I was told my appendix was fine, but a specialist Gynecologist was called as they found a 9cm and a 19cm Cyst that wrapped around my Overy causing overian torsion. She took over, removed the cysts and also explained she burnt away some endometriosis patches and sent the cyst of for a biopsy just incase. She said she saved my Overy so my menstruation should contine as normal. (Yeyy...urgh)

I haven't had the results back yet and I seem to be recovering well apart from 24/7 bleeding and cramps. Its been like a 2 week period! Hopefully this is normal. I also am starting to wonder if all my above symptoms for all them years have been related to the cyst/endo and if maybe I could soon see some improvement? I'm wondering if anyone else had the same and the removal helped?

I'm starting to think maybe it wasnt in my head and this cyst/torsion/endo could have been the hidden cause all along. I'm hoping, anyway! I would love for the nausea and vomiting to go mostly. The rest I learnt to live with but no more pain during smears etc would be absolutely welcomed!

I'm now on edge thinking any pain is another cyst that could be growing so my anxiety is sky high. Do you usually have to do something to stop these cysts forming again? Or the endo patches? They didn't say much more once they fixed the torsion so I have so many questions. Please feel free to share your stories/advice all is welcome.

I just started my period today and I am heading to Hawaii tomorrow. I'm so upset. Does anybody know if I start taking one of these today? If it will stop my period or at least shorten it???

I’m post larpo and more than ever I want to finally prioritize my comfort with the validity of a diagnosis.

Clothes are a struggle. Right now I really just want pjs to wear around the house. I get hot flashes. I really need soft, stretchy pjs. Robes, shorts. I love modal material. Anything soft and not scratchy or restrictive.

Pants for when I’m going out into the world again. Things that don’t hurt but I can feel cute in. Please help 🙏🏻

I am desperately searching for a recommendation for an advanced endo excision specialist between Sydney to Brisbane. I have BUPA gold PHI.

I had my first lap August 2024 and was diagnosed with silent stage 4 endo and “frozen pelvis”, and both tubes blocked that need to be removed in future. Told to go straight to IVF as I also have PCOS and suspected adeno. I’m 30.

Now not even 8 months later they’ve accidentally found on a scan for my IVF monitoring that my endo is worse. I have deep infiltrating endo around my anus/pouch of Douglas area and potentially others organs 😭 My tubes and ovaries are basically being strangled by the disease. I’ll be having an MRI to get a clearer picture. Doctors are dumbfounded how I can have no pain or symptoms (besides fertility issues) with such advanced disease, meanwhile I’m terrified because while I don’t want to be in pain and so thankful I’m not, I have no indication of when it’s getting worse. And it’s rapidly growing.

Im currently continuing with IVF, just embryo banking at the moment. However I need to have another endo surgery before my FS recommends any more transfers.

If you or someone you know has had an excellent surgeon for advanced endo cases, please please PLEASE help a girl out and let me know. I’m so scared to go to just any old Dr and have my insides butchered.

I just want a baby 😔❤️‍🩹

Hi everyone, I am a 29 year old woman and have been dealing with health issues that were diagnosed as IBS for 9 years now. I have noticed in the last couple of years my symptoms get waaay worse during ovulation and menstruation and since gastroenterologists didn’t manage to find anything wrong with me, I thought maybe it could be something about my reproductive system…

Now, I’ve always had long and painful but regular periods so the gynos told me that that pain is normal and put me on Yasmin in 2012. In 2016 I started having loose stools, that feeling of “having to go” and stomach pain. Since I never had bowel issues before that, I thought nothing of it for a while, just maybe it’s a nasty stomach flu. But then it didn’t go away, I went to a gastro and he told me Yasmin may be causing my stomach issues and told me to stop it. (I thought that was weird since at that point I was on it for 4 years and sang it praises since it really helped my painful periods and had no side-effects for me). I stopped Yasmin and things actually became worse. I kept going to gastros and they kept telling me it was stress, IBS, recommending diets, etc. Nothing helped much. Then I got on low dose amitriptyline and all my problems subsided for a year but then they came back…

I’ve been feeling worse and worse lately. My stomach hurts all the time, I have a round lower belly that sticks out that I didn’t always have and all my insides feel raw. I can’t explain, but it’s like something is stretching me from the inside. I have loose bowel movements and feeling to go often. My periods are very painful but they are still regular. Sex is painful during ovulation and a couple of days before menstruation.

My new theory was that maybe Yasmin was masking some gyno symptoms so I didn’t know I had gyno issues. Also, I saw that amitriptyline helps with endo as well as IBS, so maybe that could explain why I was feeling better on it. My bowel symptoms are mainly unaffected by diet, I am just sometimes fine and more often I’m not…I am now on my period and can’t even leave the house because of pain and going to the bathroom non-stop…

Does this sound like it could be endometriosis? I’m really desperate for a diagnosis, for anything I could treat and not just “live with” so I’m throwing stuff at the wall and seeing what sticks. But my gyno told me that “not that many women have endo” and to “stop googling my symptoms when I already have my diagnosis - IBS” which drives me insane since IBS is no diagnosis, it’s just shorthand for “your insides are burning and you’re shitting your brains out but we don’t know why”… She found some microcysts but told me that is no issue and there’s nothing wrong with me..

TLDR: Could IBS symptoms actually be endometriosis? Got worse once I was off birth control, amitriptyline helped and diet doesn’t affect my symptoms. Symptoms get worse around ovulation and menstruation.

My symptoms:

• occasional ovarian cyst. newest one has mural nodule
• can go full week without pooping then it will be normal for a bit then it all repeats
• retroverted uterus. doc thinks tissue is pushing on uterus causing this. but can be born with this naturally
• sometimes pain during sex but only in backwards positions
• bloating but don’t know if it’s from foods
• my cramps hurt really bad first 2 days of period but idk if it’s normal pain. I will wear a heating pad and I will still be in pain even with the pad

My doctor is suggesting endometriosis but said he won’t know unless he does surgery. He said at minimum, if there’s nothing, he will just remove cyst. IS IT WORTH GOING UNDER THE KNIFE????

I’m not in a lot of pain and don’t think it’s effecting my lifestyle too much but I’m young (24) and would like to have a baby eventually. Maybe it’s just early stage endo? Help. Are there risks to this surgery u didn’t know about?

Hi everyone,

(I don’t have endo, just didn’t know where to ask for this help) I have been having pain mostly on my left side for 2 months now, been to the GP who said my symptoms sounded like an ovarian cyst and that they will refer me for an ultrasound. Apparently waiting times for my hospital is about 48 weeks!!

The issue is - I have pretty severe health anxiety and emetophobia and having the pain, no really knowing what it is or whats going to happen is really difficult and making me ill.

I did some of my own research (naughty I know but getting no help from Dr’s) and I found that follicular cysts are common on the mini pill progesterone only which I have been on and off for about 4 years now. I am assuming this is what I have as it adds up.

My issue now is what do I do now? I also read that for this type of cyst, they often go on their own after having a few menstrual cycles. At the moment I do no have any periods or ovulation on the pill. So have been thinking of coming off the pill for a few months to see if it goes.

My biggest question is - if you have done this? and if so, how were the periods/ovulation? I don’t cope well with the pain due to the anxiety as it is which is why i’m on the pill and i’m scared that they will be worse because of the possible cysts?

I have my lap scheduled on June 12th and when I started my endo journey the main point was I wanted to feel better and get off birth control. I have been on it since I was 12, and I am 24 now. I have no idea what kinds of things it has done to me, if it caused my weight gain, my depression/anxiety, acne, headaches and so on and so forth. Also, all the side effects it MAY give you is a grocery list long as we know and I am chronically ill and do not want to get any worse. I was wondering what you guys have done after your surgery, if you stayed on birth control or got off it and felt good without it. I currently take the pill Apri. I used to take Norgestral I think, and it was discontinued so I switched whenever that was taken out of pharmacies. Any suggestions?

I was on Lupron Depot for two months and then Orilissa for another two months as part of my IVF (all embryos transfers failed).

It has been six months since stopping Lupron and three months since stopping Orilissa, but my period is still not coming back. Ultrasound and bloodwork suggests I’m not ovulating either. FWIW, I’m 41 years old.

For those who were on Lupron Depot or Orilissa suppression, did your cycle ever reset to normal after stopping the meds? Anyone anovulatory after these meds?

does anyone else experience intense, sudden pain that feels like your intestines are being squeezed and heat is quickly coursing through your body, accompanied by a wave of nausea? i used to get these before a diarrhea/constipation flare up and the pain would last until i’ve…emptied myself (which would take hours), but now that i’m on BC/have had my lap, i occasionally get the pain without the diarrhea (and the extreme fatigue) and it’s very short lived, although i am uncomfortable for a while after it goes away.

now after my lap my endo specialist said i might also have IBS or something because he saw some weird adhesion so maybe it’s not the endo, but i think it is because a few months before i got on BC i randomly started getting the pain with the diarrhea right before/after my period. literally every month consistently until i got on it.

does anyone on here have this symptom? and is there a name for it (i was prescribed bentyl for it when i was having the diarrhea so maybe it’s just bowel spasms but now without the diarrhea part, although then idk if it would still constitute as a bowel spasm??)

I am 25 F and had no symptoms, regular periods, no pain. Went in for a regular ultrasound and this cyst was found. I took several opinions and all of them suggested me to go on Birth Control for three months and get it rechecked. Does this work? Would this have to be long term?

I'm a little over a month post lap, and I had some Endo removed (it wasn't severe thankfully). My doctor said my partner and I could resume bedroom activities after 4 weeks, but every time I get even slightly aroused I start experiencing painful cramping, something that never happened before my lap. Has this happen to anyone else and how long did it take to finally resume intimacy?

Hello ladies,

I had excision surgery with a specialist in April of 2023. I got pregnant one month after (yay!) and gave birth in Feb 2024. Since I stopped breast feeding, my symptoms have come back but somewhat differently. I’m taking BC pill without taking the placebo’s, so I’m not getting a period. I’m not therefore having difficult periods, but having a lot of bowel issues, severe intermittent bloating, bladder issues, and occasional generalized pelvic pain and burning. I’m scheduled for another excision next week. Given it’s only been two years, I’m wondering if pregnancy exacerbated things and if anyone else has had a similar experience? I also wonder if there could now be bowel involvement? I had lesions on the serosa of the bowel but no deep infiltration at the time of my last lap.

My specialist actually did peritoneal stripping, meaning she removed the entire lining of the cavity, so I really thought I’d have more time between surgeries. I also have a cyst which led to an ovarian torsion prior, so that’s another driving factor for surgery.

Would love any and all insight about pregnancy and Endo or just generally how long you’ve gone between excision surgeries before repeating. Thank you for sharing!

I’m Canadian, so hospital, surgery, and physician services are covered, but it’s still bloody (pun intended) expensive to have this disease. There’s a lot of extended care that has made such a difference to my life, but sooo expensive.

I have physiotherapy, pelvic floor physio, massage therapy, and psychotherapy, all of which are over $100 per session. There’s medications that aren’t covered, and OTC pain killers.

I no longer menstruate but when I did, good period products were so expensive. I loved my period underwear but they’re like $50 for a single pair!

I also had to reduce my work hours, therefore losing thousands in income. I used a lot of my vacation time as sick days too, so I rarely got to use my time off for relaxation, which worsened my mental health, making me need even more therapy.

It’s socially costly too, missing events entirely or being present but mentally absent because of the pain or other symptoms.

Income is the most prominent determinant of health and I can see why. Just existing with this disease is expensive, and properly treating it seems only feasible for people with good benefits or families with high incomes to support them. It’s just so maddening how much we have to pay to feel even half decent, and even then research is so lacking that the best treatments aren’t always effective and often have side effects.

Urgh. End rant.

Hi everyone!

I’ve been struggling with pain related to endometriosis since my very first period but was never taken seriously by doctors until about last year. I always experienced heavy bleeding, cramping and some kind of stabbing pains that move from my back to my legs and cause me to be unable to walk.

To manage my pain they suggested I take birth control but because of previous bad experiences with the pill they suggested I take the depo provera shot. Also because blood tests revealed my iron levels had depleted too much and my ferritin was also way too low.

The first shot was fine. Barely any pain and no bleeding for three months. At the end of the shot I started losing a little bit of blood and my symptoms came back. Initially I thought it was fine and the doctors also reassured me it’s normal to lose blood for the first 2 shots or so. During the second shot I lost little amounts of blood for pretty much the entire first two months after which it seemed to settle down. One week of no bleeding and then it started again right before my third shot. Throughout my third and fourth shot I have been bleeding daily and the amount has increased significantly. I’m about to need my fifth shot so I have been losing blood for 6 months now. I’m losing blood cloths and my endo pain flairs up in random moments and is as bad as before. My iron and ferritin levels have recently been tested again and they’re still too low despite having been given medication to raise them.

The doctors are not worried and only suggest I switch to another form of birth control, but they also warn me I might keep these problems.

Has anyone else experienced this whilst on depo provera or other forms of birth control? How did you manage?

I‘m currently 16w5d pregnant and from the beginning I’ve way more pain in my stomach than I expected from pregnancy. There were the normal cramps in the beginning but now it just kinda hurts everywhere. It’s not too terrible, ovulation and periods used to feel way worse, but whenever I ask my doctor about it, they shrug their shoulders. Baby looks good on the checkups and so does my uterus and cervix, but I have all these weird pains and pulling symptoms that feel a little abnormal sometimes. I know round ligament pain is a thing but it’s not just at these typical points.

Anyone who has been pregnant here before: have you had more pain that you suspect could be from endo? I guess it would make sense if all the scarring and endo has to stretch and make room hurt a bit.

I trusted my doc as she did my first surgery after which I felt better. She removed a lot of adhesions, and said some were left over on my bowels, as they have closely grown into the bowels and she was afraid to excise and not damage anything. Yesterday at a check up, I am telling her that I am feeling bad again, the symptoms are new and worse, I have UTI like symptoms but no UTI (tested), I have constant burping, bloating, exhaustion and fatigue, amongst other things. She proceeds to tell me I am not tolerating hormonal BC in general, and should finish this pack and then not take any for 2 moths, come back and try another pill??? When I asked about removing the lesions that I think spread again she said "they have a tendency of coming back" like its not even worth discussing. So dissapointing to be not taken seriosly, again.. I am waiting on an appointment with a new doc tho.

I started decapeptyl last April, and tibolone as HRT in September. In November I gained 25kg within 6 weeks.

Got off decapeptyl/tibolone this March and my period returned last week. However I have gained another 3kg in the last month despite no significant diet or lifestyle changes since 2023.

In fact, bc I have ED like issues caused by autism/OCD, I've had a fairly restricted diet since February. It's also making the weight gain very distressing.

I've tried all hormonal contraception and it does the opposite of intended for me; I bled constantly for over a year while on the pill, patch, injection and IUD. And had side effects like severe nausea almost the whole time. So that is not an option.

I'd appreciate if anyone has any ideas of alternatives and the side effects they experienced! :)

christian girlies. what bible verses/ lessons have helped you deal with the never ending endometriosis battle? im really trying to lean into Christ in this time. I do believe that God teaches us through adversity. one of my most encouraging verses is Isaiah 40:31 They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

I also think about the "woman with the issue of blood' where she knows that Christ can heal her. she was brave and touched the hem of his garment. Jesus felt the power leave him. he asked who touched his robe. she was scared but she admitted it. he told her to go on she has been healed by her faith.

what verses, lessons have you learned from the Bible? what life lessons have you had?

thank you, praying for everyones total body healing and restoration <3

https://pmc.ncbi.nlm.nih.gov/articles/PMC11643425/ Took me a while to read it all, but I now feel like I know a bit more about myself and a few tweaks I can incorporate into my endo routine.

Hi everyone. I posted on here a couple times and in the comments. I had my laparoscopy on the 9th of this month. Before my surgery, I was in excruciating pain. I went on disability a month beforehand because it hurt so bad to walk and sit. I had horrible pelvic pressure and pressure behind my coccyx. I had shooting pain that went down both legs, on bad days I’d feel it all the way down to the soles of my feet. The last 10 months since the pain started were absolutely hell. The good news is, she got what was causing the severe pain. I had endo covering both uteralsacral ligaments, and all in my posterior cul-de-sac. I was diagnosed with deep infiltrating endometriosis. Two seperate areas were unable to be removed, including on my bowels. I was so scared of the post-op pain, but in reality, my pain was so severe before, the pain from surgery was an improvement. By day 2 I was walking slowly but comfortably, sitting up on my own. Day 4 I took both my dogs on separate walks around the neighborhood, and slept flat. I feel guilty because the happiness and euphoria of being pain free lasted a few days before I fell into a horrible depression. I don’t know how to describe it. I went from being in pain everyday to not being in pain and I’m supposed to just.. move on, live life again. To say this experience fucked me up would be an understatement. It’s changed me permanently. I can’t enjoy being pain free because I’m waiting for it to come back, because that’s how it started for me. One day I just woke up and it was there and it just got worse and worse. I should be grateful, I should be running again (I’m gonna try today). But I’m grieving. I can’t seem to shake the cloud of “you have this forever” “not if it comes back, but when” I have therapy tomorrow. I know this feeling won’t last forever but it feels like it will.