Endometriosis Puns

Age: 27, female, 5’1. Endometriosis. Symptoms were extremely painful debilitating cramps during the first day of my cycle along with vomiting, fever, and almost passing out.

I am one of many patients who have suffered endometriosis for YEARS before finally having enough and needing to find a specialist who would take my pain seriously and get me my diagnosis. This is such a common theme with woman with endo and it’s really sad. Extreme period cramps are not normal and shouldn’t be overlooked. Since I was 15 (diagnosed endo at 27) I have expressed my pain many times and the only answer they gave me was birth control. Once birth control was barely helping my pain, they only suggested me taking it to where I no longer get a period or get it every 3 months. I chose the 3 month option but I eventually asked for higher pain meds, since I did not wish to fully stop my period and naproxen barely helped me, and got denied as if I was some junkie just looking for pills. I’ve asked about the possibility of endo many times and got dismissed. They didnt want to do any surgeries unless I was ready for kids, which is ridiculous because it can continue to grow and cause serious permanent damage if not removed. It wasn’t until this year I had to find a specialist to get taken seriously, and she scheduled a lap for me right away without hesitation. Endo was found and removed via excision and for the first time in my life during my period, no more pain. My life was significantly changed after this, I felt like it was a miracle honestly. But why couldn’t this have been done years ago? I am just disappointed and feel like I was gaslighted this whole time, and this is so extremely common amongst others with endo. Is it lack of training? Do they want to just move on to the next patient? I’m genuinely curious.

Edit: I was not expecting this much engagement with this post, but thank you so much everyone who took the time to share your stories and opinions!! It’s so interesting to see everyone’s different views and experiences. And thank you so much for the silver and other awards!! You all are amazing! For those still struggling btw, you are strong, and you got this. Never ever give up on finding the treatment/diagnosis you deserve, and I mean that for any condition, not just endo.

Sorry to get on here and vent but i feel like if men suffered from endometriosis....they would have already f***ing cured it. Or at least There would have been trillions and billions spent on research and treatment, you could get disability for it, you wouldnt have to beg medical professionals for help, insurers would take it seriously, you could take time off work for it without catching hell from your boss, it would probably have a month dedicated to it like breast cancer awareness month, etc etc etc. I just think if men got it things would be different. It seems that we get more than our share of medical problems. It feels like a curse to have a uterus sometimes. Is there anything men get that is as bad as endo? I wish i could donate my endometriosis to Mitch McConnell or Ted Cruz

P.S. Sorry for the rant. Full disclosure im having a really bad flare up and im lying on 2 heating pads and i took a huge pain pill a few mins ago

P.P.S. Have a good evening everyone and stay strong lets get thru another day

***EDIT- I think the point i was trying to make in my pain and pain pill stupor last night is that men and women are treated very differently when it comes to getting relief from chronic conditions. If this wasnt your experience im glad you had a positive experience. I think a lot of us had to struggle and suffer for a long time before we got our diagnosis and then getting treatment and any kind of relief is another herculean task. I know men also have health problems and i didnt specifically mean that they dont have endometriosis but i was trying to draw the conclusion that chronic conditions are often handled differently between genders and the unfairness of it makes me seeth witb rage.

10 years ago i had a endometriosis cyst the size of a football removed. A FOOTBALL. It was so big it crushed all the organs around it. The doctor told me he was going to send it to a teaching hospital to be studied and i think he submitted a paper on it. a year prior i told 3 different doctors there was something wrong with me. I was given pain pills, antibiotics, told to lose weight, drink more water, told to exercise, periods are painful, etc. I had to travel to a specialist hours away before i was properly diagnosed and had surgery the very next day because i was so ill.

According to Wikipedia, “Women suffering from endometriosis see an average of seven physicians before receiving a correct diagnosis, with an average delay of 6.7 years between the onset of symptoms and surgically-obtained biopsies, the gold standard for diagnosing the condition. This average delay places endometriosis at the extreme end of diagnostic inefficiency.” (source)

What makes Endometriosis so hard to diagnose? Is it purely social factors (“periods are supposed to hurt a little, get over it” etc.) or are there other factors involved that complicate diagnosis?

Hi Ladies,

I have endometriosis and two failed transfers of PGS tested embryos so far (negative beta, no implantation). For those of you with endo, how many transfers did it take before you had successful implantation? Looking for hope! 🤞

My gynaecologist wants me to have a laparoscopy to check for likely endo. But if there's no cure, why bother going through such a stressful process + having a scar just to... not get any treatment? Can anyone tell me how their life improved after the diagnosis? Or does it just continue as normal but now you have a name for it? I know a lot of this sentiment is coming from my fear of having the operation, but then if it stresses me out that much and the benefits seem to be non existent, why go through the whole scary process? It's not as if my periods will stop being painful, or my PMS will magically clear up with a wonder drug. What are the thoughts of people who have had it?

He will make available specific funds for it, saying that getting diagnosed takes 7 years as an average (I know...not close enough to the truth), and that medical personnel should be noW following special courses about it etc. Maybe some of you will be able to come to France to be taken seriously and be operated !!! I'm so happy we are finally heard...at least here :)

Sorry this is going to be a rambly mess.

So three days ago I collapsed suddenly because of severe abdominal pain, went to the hospital, got carted around for tests all day and finally in the evening got told I'd have an appendectomy and laparoscopy the next morning because they weren't 100% sure what it was. Apparently something on my fallopian tubes looked off and while preparing me for surgery the head gynaecologist was super understanding of my childfree stance and told me if one of them is ulcerous, they'd remove both, effectively sterilising me in under 24 hours of being committed. I was so hopeful.
Sadly enough the problem was not on the tubes but the ovaries, it was a myom (?) as well as endometriosis. (The appendix was removed as well even if it did nothing wrong)
In the aftercare talk, that same gynaecologist apologised to me that the tubes were both fine and removing them would not have been justified. And told me I'd get some hormone pills for immediate aftercare, 1-2 months of gestagen she told me, with little side effects.
I've never taken hormones before and the gynaecologist that brough the recipe earlier was so dismissive and said stuff like "The best treatment would be to get pregnant soon. Do you want kids?" "No absolutely not" "well as I said a quick pregnancy would be best. If not you need to keep renewing these pills at your gyno"
Then I started googling and apparently these have very severe side effects and I need to take them indefinitely now?? Tell me this is a joke
I have bad enough headaches, migraines, depression, low sex drive and acne as it is, and if I gain weight I would probably spiral even further.
What the hell do I do now, I don't want any of this, can't they just cut it all out?
I'm not thinking straight, sorry
Just somebody tell me it's gonna be okay

EDIT: Thank you all for the support, I have calmed down considerably. I also saw that the package is for 28 pills only, so I am going to start them and see if there's any bad side effects and stop immediately if there are. I will contact my absolutely fantastic gyno also to talk about options. I'm probably going to be fine

When I was 16, I passed out while working at Starbucks from blinding abdominal pain. The doctors gave me an ultrasound, and sent me home with naproxen because I didn’t have enough ovarian cysts to justify a PCOS diagnosis. Rinse and repeat roughly the same story for over a decade. I’ve been on so many pills, patches and shots over the years and all have caused my symptoms to worsen or had horrific side effects (migraines, vomiting, depression… you name it).

When I was 21, a doctor recommended an IUD (Mirena) because she thought it would help with pain management and give me a more regular cycle. The insertion was horrific and the six months following were the worst six months of my life. I would go back to the doctor regularly to tell her I was bleeding constantly and the pain was so much worse. She kept telling me to give it more time. I ended up in the emergency room after passing out again (this time in the shower). The ER doctor was appalled at my story but ultimately couldn’t do anything beyond removing the IUD. Obviously I never went back to the gynaecologist that gave me the IUD and spent a long time recovering. I ended up dropping out of university largely in part due to the pain and stress it caused.

In the summer of 2020, I had a phone appointment with a new gynaecologist. When I told her my story, she scoffed and told me my story sounded unbelievable and essentially called me a liar. She told me the last ultrasound that I had seemed relatively normal (which I already knew) and that I should try another birth control pill. I hung up and just cried for hours.

I went to a new gynaecologist about six months ago and for the first time, it seemed like someone finally listened to me. She said she was comfortable diagnosing me with endometriosis based on my symptoms and I cried, again, but this time it was because somebody finally took me seriously. However, she offered only hormonal treatment options. She also told me she wouldn’t do a laparoscopy as it is invasive and she would only do it if I decided to have children and was having trouble conceiving. For the record, I don’t, and will never, want children, and I’m definitely old enough to make that decision. I tried two of the treatment options she suggested (both with similar results as the other treatments I have tried, shocker) and at this point I am practically begging her for a laparoscopy. She said she would rather try a different IUD, Kyleena, first. I’m honestly devastated as I will not

Currently taking birth control for pain and possible endometriosis. My OBGYN prescribed the medication to me. Recently she instructed me to take the hormone pills continuously and skip the inert pills entirely so that my pain would be lessened further. My father is unhappy with this and doesn't like the fact that I'm taking the medication. Glossing over a lot of his strange opinions and stances on things, I'm going to be seeing a naturopathic doctor (who is familiar with both western and naturopathic medicine) this week. I'm not opposed to different options or ways of handling things, I'm not opposed to second opinions, however there are goals that I have concerning my pain level that need to be met so I can function. Is there anything I should ask of the naturopathic doctor in regards to managing my endo? Are there really any "natural" ways of dealing with it? I really don't want to be taking 6 or 7 supplements (that my father wants me to take) just so I don't have to be on the birth control. I don't believe that's going to be sustainable for me and honestly I don't think they're going to meet the goals and what I need for pain management now. Are there extreme risks to birth control?

I’m 26 and was diagnosed with endo (endometrioma and endo around my bladder) three years ago.

I was just wondering if anyone had gone through anything similar and what worked for you in dealing with these infections?

Is there not any other way to see if you have endo before going through the procedure?

Wow. I always knew women were so strong, but Jesus Christ, you are all so strong. I don’t know how you get on with day to day life. I wouldn’t be able to cope. We’re close to €10k and I hope we can raise so much more for all you incredible people!

While my abdomen swells larger every day, I am barely functioning due to extreme fatigue. I’m in pain and struggling to manage other symptoms that have returned 6 years after surgery to remove end stage endometriosis tissue, and ovary that was entwined with a huge chocolate cyst. Two doctors I see on a regular basis have conducted test after test and believe my symptoms are due to endometriosis and recommend a hysterectomy. Trying to convince my gynecologist is harder sell. I’m not interested in his suggestion to go on a total of three forms of birth control. I’ve been down that road. I want it all out. I’ve lost all quality of life and on the verge of breaking. I faithfully followed the doctor’s recommendation to manage the endo post surgery and not only is it back, my symptoms are compounded. Now I want to decide how to handle this disease and I want a hysterectomy.

Does anyone on here have bladder endometriosis? I’m just turned 16 and was diagnosed with interstitial cystitis about 1 year ago but now think i don’t have that. I’ve tried almost all treatments for IC and none have helped. I have a lap in a few weeks to check for endometriosis since it can grow on the bladder. Just wondering if anyone on here has endometriosis on their bladder that caused severe frequency and pain.

Hi all, trans guy with suspected endometriosis here really struggling to manage the pain.

I'm in constant moderate pain but it gets debilitatingly severe for about a week of every month in which time I can't do anything except lie in bed in a ball even on tramadol/codeine. We've ruled out infections and my ultrasound is clear, so suspect endometriosis but am waiting on a referral to investigate further - first appointment isn't until April. I have some bowel inflammation too, and will need to rule out IBD (yet another referral I'm waiting on) but it seems more likely to be lesions on my bowels at this point bc I don't think I have the right symptoms for IBD.

I was wondering what different strategies/paiin killer combos people have found effective? I've tried several and tramadol is my go to as I get less side effects and deals with the day to day pain really well, but when it gets severe it takes a 9-10 down to a 7-8 and I still struggle to do much of anything. They won't give me anything stronger even in the hospital, so I'm now in the territory of trying to mix the opioids and NSAIDS (both my opioids are combo pills with paracetamol). I'm currently running on no sleep and have been on a total of like 5 different meds in the last 12 hours and nothings gotten it lower than a 7/8. Plus, the pain is getting worse every time it gets severe and I'm really dreading having to deal with this any longer. I'd appreciate any advice or to hear about what helped for anyone with similar pain.

Hi all

Today I got the results of my MRI and it has been confirmed I have stage 3 or stage 4 endometriosis. 1 endometrioma of 2,3cm on left ovary, one of 0,5cm on right ovary, small cysts on both ovaries, and adhesions between my left ovary and the sigmoid colon, with a 1,7x2,2x0,5 cm nodule. I have yet to wait for the doctor to call me to go through these findings with me. I’m so happy to know what has been causing all the pain, but so sad at the same time. Are there people with similar findings through MRI? What were your next steps? Thank you.

Is there anyone here who has endometriosis? If so, have you experienced any complications during pregnancy or childbirth?

I’m absolutely terrified of pregnancy for so many reasons... one being that I have endometriosis, and I’ve heard that this can increase the risk of serious complications. :/ For a few years, I told my husband that I would only have kids if we get a surrogate, because I’m worried that pregnancy/labor would be too dangerous and painful for both me and the baby. Well, that still hasn’t happened because surrogacy/IVF is crazy expensive. So I decided to try to conceive naturally (for now) and hope for the best.

I just wanted to hear from someone else who may have been through this before in case I DO get pregnant soon! Is it even possible to have a healthy pregnancy when you have endometriosis? Would I be more likely to need a C section? :/

What did your symptoms look like after delivery? How long did your symptoms take to return? Was it recommended you go on birth control quickly after delivery to slow down progression? What forms of birth control have worked best for you?

I had surgery in March of last year with a few confirmed spots of endometriosis that were removed. Before the surgery I had daily cramps and stomach pain. My symptoms are completely gone with pregnancy which has been amazing but I worry what things will look like after delivery. I've read breastfeeding can help as well?

Thank you!

Background:I'm 18F. My mom, grandma and great-grandma all have endometriosis which puts me at a very high risk of it. I've never had painful periods, my hormones are fine and I'm in general a healthy person. I'm really afraid. Is it just genes that cause it or are there other factors too?

Edit- I’ve gone down every possible road that could be the cause of my current symptoms and have ruled out an extremely long list through extensive testing from a multitude of doctors I have on board. I am really just looking for bowel and or diaphragmatic endometriosis stories related to upper GI pain and symptoms.

Please help!!! (note that I have EDS, MTS, PCS, endo, MCAS, dysautonomia/POTS which I had a sudden onset of when these other problems began and we went that route first and to no avail)

I've been going through life altering symptoms that became an everyday thing at the end of August. All GI symptoms, mostly upper GI, excruciating pain after eating, horrible epigastric pain, diaphragm pain which is separate from the epigastric and or stomach pain, random food "intolerances" that seemed to appear out of nowhere and absolutely NO rhyme or reason as to what my body can and can not tolerate. The other big thing is problems with my breathing, rib issues, rib burning, ribs popping out, popping when I exhale, and the worst of all is the severe constipation. But when I clear out or go to the bathroom (either 1 or 2) the pain gets even more severe.

I'm super malnourished, I can't function, we have ruled out lots of the typical GI related conditions, but there is so much more going on. I was also already treated for SIBO, gastritis, IBS, GERD, etc. At first we started to think this was endometriosis related then we started investigating vascular compression syndromes since I already have a history with PCS and MTS. But now I'm thinking endometriosis may really be to blame especially considering how much worse I get when I start spotting. I can barely eat anything at all, half the time I can't even tolerate jello well, but on my period I can't even drink gatorade or pedialyte. Yet at other random times, I can. I have seen multiple Gi doctors, already saw a compressions specialist this past week and he brushed off everything and it was a huge let down. I have so many other symptoms that are just a lot to list, but I'm really in a panic because I'm worse every day that passes and I can't keep going on like this.

If ANYONE has any experience with bowel endo, diaphragmatic endo, or any kind of endometriosis that caused GI symptoms and are willing to share that experience please let me know and if you rather DM about it instead that's fine, I would appreciate a bit more insight. I already have a history of endometriosis starting in 2015 and I ha

I've been waiting 3 years to have excision surgery, I accessed support for stage 4 or severe endo purely from a fertility perspective (I'm same sex so no one has ever listened to me about the impact fertility has on me)

I was told to lose weight initially, to see how my endo responds (GP's advice is laughable) I had a diagnostic lap during the pandemic that should never have been done, as they were aware from the get go that my endo was too severe for any kind of district (rural) hospital to deal with. But go ahead, let's waste all our time.

After the ridiculousness of a diagnostic lap where she couldn't even get the camera in without risking puncturing my bladder as its twisted and stuck to the front of my abdomen she decided to refer me (thankfully) to the Arrowe Park surgeons who are UK's most advanced. That was 12 months ago. I call frequently and get told to stop calling just wait. I started this when I was 33, I am now turning 37 and am no closer to having a child. The fertility clinic said I need to have this surgery first to be able to carry a pregnancy to term, my uterus is stuck, and won't stretch around a baby. Not only that my ovaries are stuck to my rectum. They won't be able to respond to IVF meds safely. I don't even want to carry so much as I want the last of my eggs out.

I can't go to my GP now, and I'm feeling hopeless and I want to give up. I need help with my mental health but can't. My wife and I are getting assessed to adopt and I know that mental health appointments are heavily scrutinised by the adoption agency and can go against you.

I feel like my fertile years are gone. My ovaries are covered in endometriomas. What was once probably a salvageable situation feels completely ruined.

I finally got that confirmation. After tens of doctor dismissals, and being gaslit for years. I finally have validation. I am emotional...

Edit: got all the lab results, I have adenomyosis too.

If anyone has any recommendations, please share!

I haven’t been diagnosed yet but I am definitely having almost all the symptoms of endo and vaginismus. I am seeing a gynecologist in February and will talk to her about this but I wanted to post here and see if anybody else relates…

I’m 21F and it was hard to have sex for the first time with my boyfriend because of my severe tightness. But we finally managed to do it and it felt great. However, I bled way more than expected. I expected a few drops since I was a virgin but I bled enough to where I thought I started my period but I didn’t. It happened again during the 2nd and 3rd time. I also felt extremely sore down there for about 2 days after doing it. This really concerns me and I am wondering if this is a common symptom of endo or vaginismus.

New to this sub because idk what to do. I'm a 20 years old transgender man, pre-everything, and I suffer horrible, crippling menstrual cramps that heavily impact my day-to-day life. I've tried bringing this to doctors when I had my parents health insurance, and I was told to stop being dramatic, and take some painkillers. I went to a free health clinic more recently, got a referral for an ultrasound, and besides my right ovary being attached to my abdominal wall from a previous surgery (something else I really want to have something done about because that area causes me a lot of pain), they told everything looks great! Except it isn't great. Something is horribly wrong and I can't live like this anymore.

I am in pain 2-4 weeks a month, every month. I have cramps even when I'm not bleeding, they get much worse during. Usually during the active week of my period, I have to call into my job for at least 2-5 days in a row, which is severely affecting my finances and my job security. During the period of time I'm bleeding, I have pain so intense it makes me vomit, it blurs and blacks out my vision until I can't see. I've blacked out from it before, like been sitting or standing and collapsed and been unconscious because of the pain. I can't stand to do dishes, I can't walk to clean, stand to go to bathroom or even use the bathroom, I can't even sit because putting any pressure on my abdomen hurts so badly. Laying offers little to no relief. No over the counter painkillers do anything to even touch the pain. Sometimes I can't eat because my organs feel so crushed and strained and I'm hurting so badly that I vomit everything back up.

Sometimes I'm convinced that every organ in my lower body is fused together, and describing this to my grandmother who had endometriosis, before I even knew what endometriosis was, is what made her suggest I might have it and got me sort trying to look into it. It feels like my intestines, my bladder, and my anus are all fused together. If one of them hurts, all of them do. If I sit on my period, my whole lower abdomen cramps up. If I need to pee, or poop, every oragn down there cramps up in a way that's so immensely painful, and sometimes it lasts for hours after. I just freeze up and cry out and can't help it, it's horrible, and it prevents me from having normal bathroom functions which just causes more issues. Sometimes I struggle breathing, and lately I've started feeling like my stomach is becoming part of "the mass" I

I [24f] suspect I may be suffering from endometriosis. For over the past year especially my cramps have been incapacitating, my periods are longer (7-9days) and heavier (3+ size 5 pads and/or 4+ Super Tampons daily), my PMS starts earlier. I have the Paragard IUD since 2016 so this isn’t an issue. Today is especially bad, I have a burning pain in my lower abdomen I would say at a 6 on the pain scale, that makes me sweat and radiates down my legs and this has been ALL DAY. This is three days AFTER my period though, so I could be wrong it could be something else. All I know is somethings not right but the thought of pursuing Laparoscopy scares me in of it self, as well as the medical bills that follow it. But what scares me more is delaying the inevitable and increasing my chances of infertility if this is in fact endometriosis and I do want children. This was not always the case for me. I would say I had typical PMS and menstrual cycles and cramps were not an issue for me until I got my IUD but my IUD was checked for placement and perforation. So to reinstate my question, what was the final straw that lead you to pursue the necessary procedures and treatments? Do you feel better afterwards, that it is more manageable and has less impact on your day to day activities?

Is there anybody by chance who has endo? Do you notice any connection between taking Sertralin and your endo symptoms?

The thing is, I started my medication 1 week ago (75mg) and strangely enough my pain, which was away since month, is back and it is the worst it ever gas been. So I am trying to figure out if this is connected to Sertralin or something completely not connected.

Any experience/help highly appreciated!

anyone else struggle with these? my period starts and i’m emotionally gone but in debilitating pain. then i have a week of being okay, then i feel great but have ovulation pain, and then it’s time for PMDD that makes me desire a week-long coma. sometimes it feels like everything has to be worked around my cycle, and if my PMDD is not causing me psychiatric distress, i’m generally in a shit-ton of pain. how do y’all deal with these 😭

Hi all.

My partner has endometriosis. She recently got diagnosed but it’s always been an issue for her. But now we have an actual diagnosis.

However we have a question.

Sex has always been painful for her and for a long time sex has basically been off the table. Our question is, what do you do to make sex more pleasurable and enjoyable when it’s painful due to your condition?

I’m 24f, average weight and 5”4. No real health problems apart from allergy and migraines.

I’ve been having stomach problems lately and went to my doctor. He thinks it’s possible I may have endometriosis. I’ve been on the same pill - with one six month break - for 8 years. It works well for me and stops my periods and migraines which were hormonal.

Before I started my pill I would have extremely painful and heavy periods, and I’d get a migraine at the start and end of every one. My periods were bad to the point where I would be doubled over in pain. My question is, would these symptoms that I had before I went on my pill indicate endometriosis?

Hey,

as France announced the launch of its own national endometriosis strategy, the German Endometriosis Association (Endometriose Vereinigung Deutschland) want to use the chance to push the issue to the Federal chancellor and the federal minister for health.

So, if you are German: You can find a template for letters/emails and a position paper with 15 demands on the website https://www.endometriose-vereinigung.de/aktuell.html.

Please do share with other people, who might be afflicted and want to partake.

Greetings

I have been struggling with pelvic pain since I first started having periods, both during periods and not during periods. However, it's worsened over time. I now take menstrual suppressants, so I don't have periods anymore. But my pain has still worsened over time, and now my quality of life has been affected. Over the years, we have tried or considered everything for treatment, even had endometriosis removal surgery in 2020, but nothing worked, at least for long-term.

My doctor is now willing to at least talk about hysterectomy. I know my uterus would definitely be removed, and probably my fallopian tubes and cervix, too. But the big question is whether to keep my ovaries or not.

My (endometriosis specialist) doctor claims pain relief will only happen if both ovaries are removed (I understand endometriosis cannot be completely cured). I need to decide whether to keep my ovaries, maybe keep one ovary, or remove both. If I removed both, I could perhaps get this implant they're offering now that my doctor recommends, which is a natural hormone replacement therapy (my body has never responded well to artificial hormones, including hormonal birth control), however, insurance doesn't cover it and it's expensive.

For reference, my reason for hysterectomy would be for endometriosis and general years-long pelvic pain that has not responded to treatment and has worsened over time, and I am nowhere near the natural menopause age.

Hi all!

I got my MRI results and while waiting for my doctors call, I was hoping maybe some of you could enlighten me a bit on the outcome. It says I have endometrioma (2,5 and 0,5cm) on my left and right ovary respectively, and multiple smaller cysts on both ovaries. Furthermore my left ovary seems adhered to my sigmoid colon, with a 2,2x1,7x0,5cm nodule. Does this mean I have Deep Endometriosis/bowel endometriosis? I’m so nervous for the doctor to call and there is just so much info online… Thanks.

Edit for typo

Hi! I'm just starting my endo journey (finally!!), after many years of waiting. My doctor has advised me to get the Mirena IUD to manage my symptoms and has encouraged me to skip the surgery as she's "convinced" I have it. I also think it's likely due to covid (area is still in lockdown), and me being located in a small town.

I've had the IUD now for just over a month and it's slowly getting better, but I do get waves of pain. But plus side, I've stopped spotting as of three days ago (after over a month). But, I want to know if there are other things I can do to make my life easier? I still live at home, so I can only control two meals a day - when it comes to food. But if there are any vitamins, exercises, foods to avoid, etc. that you know of I'd really appreciate it 😭 I can't keep missing days of work due to pain - especially since I work from home (very blessed to do so).

As a bonus question - do you disclose to your work that you have endo?

Thank you!! ❤️

Hi,

First of all I am so relieved to find this community and am so thankful for this sub.

I’m a 30yo female who got diagnosed with endometriosis last September. I had a solid lump on the pelvis and after a full year of daily pain and three ob-gyn, a surgeon finally offered to do a biopsy and remove it. They also perfomed both a laparoscopy and a chromo-perturbation at the same time, which confirmed the diagnosis. They said they removed three extra spots on top of that lump near my abdomen and my bladder. The chromo-perturbation showed that most likely one of my tubes is blocked by endometriosis.

This diagnosis came exactly when I started trying to have a child (it would be my first). All my friends have claimed they got pregnant within months of trying. It’s not like I’ve tried for super long yet, but I am so stressed out by the idea that my diagnosis could prevent me from having a child.

I come mostly for advice / thoughts from people who had the chance to get pregnant despite the diagnosis. Is there something I could/should do to boost my chances? My obgyn just said to wait 6 months to a year before freaking out, but there’s a big difference. Can I do some tests that would reassure me? Thanks for any advice / personal story you could share.

Ps: I apologize if the question is very naive, I literally heard about endometriosis for the first time from my surgeon, and have been left with self-education since then.

Hey ladies. I have PCOS. So I had a hysto a month ago. She found endometriosis - and in fact left one of my ovaries and part of a tube stuck to my bowel (adhesion).

I had many reasons for this surgery. A couple being cyclic flares and PMS. Both are pretty debilitating. Sometimes I’m in bed for days. Sometimes it lasts 2 weeks out of the month. I’m now entering my second cycle and not much has improved here and I’m at my wits end. My doctor suggested we go back in and take my ovaries. SCARY! The thought terrifies me as I am only 42 years old.

My question is, anyone out there have their ovaries removed for any or all of these reasons? What was the outcome?I’m so sick of down and out. I just want some normalcy in my life. My facial hair is getting worse. The older I get the worse my cyclic symptoms are. I just want relief. Is it worth it?

TIA!

Had a C-section 2.5 years ago.

Endo formed around the incision area, based on what they could tell from ultrasound images. It only hurts during ovulation or menstruation.

Doctor recommended taking birth control for 2-3 months and see if it shrinks or not. Otherwise, a surgery.

I am so scared that the surgery might make it worse– from what I've read from this sub surgeries are definitely not a silver bullet...

I made an appointment with a OBGYN who's famous for Endo treatments for February just to get a second opinion.

Also could my condition be a medical mal-practice? It definitely derived from C-section operation, and I'm wondering if it could be something that they could prevent.

Hi all, just found this sub and found it so helpful. I just wondered if anyone has any really bad flare ups related to running/exercise? I’ve been diagnosed with endo for about 5 years but It’s only really started in the last 12/18 months that I get really severe pelvis pain after running (sometimes any exercise) any long than about ten minutes. This comes with being sick, a feeling of needing to empty my bowels but unable to, shaking and just generally being bent over double. I had a lap in Dec 20 which found some endo which the dr carried out ablation on although I have very little trust in that dr, especially six months down the line when she decided to tell me there was additional spots they thought were endo but weren’t sure that she hadn’t removed.

My pain is pretty bad in general but I’m trying to get out and move a bit more as not being able to is really starting to affect my mental health. I just wondered if anyone else had experience similar type symptoms and had any tips for management?

Apologies if this is a bit of a ramble, just trying to infer all my thoughts out. Any tips would be appreciated! Thank you

I’ve been diagnosed with endometriosis since early 2017 but never received a full diagnosis until 2019. I’ve been on the contraceptive pill to manage it since then and it has worked until recently when I started having worse pains not even on my period and other symptoms.

I had an abdominal ultrasound last week as I can’t have an internal (NHS won’t do so on those who have never been sexually active regardless of age) and got my results today. Apparently according to my results there is no endometriosis. How the hell?! How can one ultrasound back in 2018 show I have endo but this one three years later says I don’t have endo? Did it just magically clear up!? The scar tissue from my endometrial lining that grows elsewhere suddenly went?!

I’m now waiting for a referral to see gynaecologist to find out what’s going on. I’m so angry and upset because this is not what I was expecting. I’ve been managing a condition that I apparently don’t have for four years and now I feel like I’m back at square one knowing diddly squat. I just don’t understand.

i know I could easily Google it but I'd rather rely on your experience with it. I've seen people talk about it on here and related to the symptoms. i seem to bleed from there during my periods, which due to the internet is rare but possible when you have bowel endometriosis. I thought that maybe my bowels are getting too irritated during period (just like my bladder or even stomach) but regardless of it I do not think it is the cause of bleeding since bleeding requires some mind of an open wound or at least abrasion of tissue. I told my doctor about what I experience and asked if it could be endometriosis but he said there was no such thing as bowel endometriosis and that there's no way of me bleeding from there

I appreciate every comment :)