Endometriosis Support

Endometriosis Support

Creator: Glow

Members: 35,213

Rectal Endometriosis seriously

I was in my norm excruciating pain last night with my cycle, got ready with heating pads, meds, and a new device called Livia.Then all of a sudden I started to feel pain in the anus!!! WTF just like cramping. It was so painful. Came to find out it’s a thing with Endo like what gives Lord!!!I cried all night long, I couldn’t sleep at all. 😔

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Comments 6

Last reply Aug 26, 2024

Je

I have it too. Final straw for me was when I got a butt cramp so bad I couldn’t move for 14 hours 🙃 I had laparoscopic surgery in January and have no had another cramp. They just needed to remove the endometriosis tissues and it fixed everything. I know how bad it is. Wouldn’t wish it on anyone

Perimenopause road anyone

I’m 41 and even though I think it’s early, I can conclude that my symptoms are really hitting that stage. Since the beginning of the year started with getting a bit hot at night on my legs( I got cooling blankets Big help) weight gain 😭 again, my anxiety has been crazy at late evenings I can’t seem to stop and feel so guilty. I have no energy to workout and used to be very active. Irritated. But my hormones are functioning perfectly said my endocrinologist. My cycle 3-4 days normal to small bleeding. But the pain has become worst than unbearable, sharp spams that come and go and I don’t know if anyone gets like pain in the vagina, like in the opening. I can’t even walk, I have to curl up and squeeze and it hurts!!! Lower back pain always. My life has been miserable. OC medicine does nothing for me nor Ibuprofen 800. I have laid down and cried from the pain I feel so desperate. This last time the pain lasted about 3 hours nonstop and I was NOT on my cycle. It’s a new thing for me now a days waking up with pain. What specialist can I go see??? I’m from Houston and doing some research, but we lack someone knowledgeable on that matter. I follow a doctor but from New York on IG that emphasizes on this issue, but I don’t have medical insurance. How do you deal??

Upvotes 1
Comments 1

Last reply Aug 24, 2024

💕

39 and i have premenopaus!

WWYD. Contemplating.

Story line short. I have stage 2 endometriosis. Some months are worse than others. I am on nexplanon for birth control to help with the endo symptoms. Which it does. I got my renewal January 2023 and ever since that, my periods where alll over the place (mind you never was before that), I have become moodier, acne like a teenager, low sex drive, weight gain that I can’t get off. One side effect of it is higher risk of viral infections (which I haven’t had) but am scared of cause my youngest has PANDAS. Question would be do I risk the pain getting off the nexplanon and have my husband get a vasectomy. (No more kids for us, 2 is enough stress especially with my youngest having medical issues and already 35.) If you were in my shoes what would you do?Edit to add: I have spoken with my dr and she told me that is all my decision and that a pain plan would be in place. My husband is ok with the vasectomy as it’s much less invasive than getting tubes tied.

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Comments 0

Last reply Aug 12, 2024

Anyone else? Please read.

I got diagnosed with endometriosis when I wad 24. I'm about to be 30. I went undiagnosed for so long that my first surgery was over 3 hours because of how bad everything was. I've had 3 pregnancy losses since then, 1 resulting in emergency surgery losing my left tube. This year I got sent to a specialist and found out I also have uterosacral and rectovaginal endometriosis. Has anyone else been diagnosed with these forms of it? I've never heard of them until this year & it explains my pain so much more.

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Comments 2

Last reply Aug 21, 2024

Ev

How is your pain like? And where exactly? I’m curious because I’ve been experiencing vaginal pain, like severe and wonder if there’s something else to add?? 😢

Bleeding for 19 days straight

I was diagnosed with endometriosis a year or two ago. I’ve been putting off the hysterectomy because life is too expensive to take off work. My period is always regular, but very heavy and painful. This month it was EXTREMELY painful, and way heavier than usual… and it hasn’t stopped. I got it on the 12th and it’s now the 30th and I’m still bleeding. It’s not like normal bleeding though, mostly old blood with a few spurts throughout the day of bright red blood with small clots. Never fills a tampon, I mostly just “free bleed” because it’s not much at all but it’s very annoying for one and concerning. What could this possibly be? Anyone ever experience this? I’ll be calling my doctor in the morning but just thought I’d ask if anyone has ever dealt with something similar and what answers they got.

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Comments 9

Last reply Aug 5, 2024

St

Do you have pcos

Possible endometriosis?

During the first few days of my period my legs tend to go numb because of the cramps. The pain travels down to them and feel I start feeling weak in the knees. Possible sign of endometriosis?

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Comments 2

Last reply Jul 30, 2024

Je

Symptoms are really unreliable when it comes to endometriosis. You can have zero symptoms with endo, or any combination of dozens or symptoms to any degree. Personally, i wouldnt do a laproscopy based on just that symptom.

I will never be able to have sex…

I’ve been diagnosed with endo for 6 years now and have had to surgeries (1st was ablation and 2nd was excision). I’ve been in pelvic floor PT for over a year now and am trying out trigger point shots. I’ve taken muscle relaxers and tried just about everything at this point… but I am getting so depressed about not being able to have sex just because of pain… I feel so embarrassed and I genuinely don’t know what to do anymore. I don’t even date anymore because I am so tired of explaining why I am a virgin. Does anyone have any suggestions on how to make penetration less painful??? Thank you ❤️

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Comments 8

Last reply Jul 24, 2024

La

You are doing everything you can to take care of yourself! If a man doesn’t understand that, that is his problem. PT have lots of recommended at home exercises you can do and even some devices to help you get used to it. Practicing mindfulness during these exercises is key to relaxing your muscles. Do them daily. Don’t skip appointments or steps and don’t pressure yourself to do more than you are comfortable or ready to do. You will need someone who can stop when your muscles lock or get too tight and cause you pain and can help you relax to open them back up. Not everyone is up for the task. That is not on you! The muscles just need a little TLC and you have more nerve sensitivity than other people which makes sex challenging and sometimes painful. I’m sorry you have to go through all that. I have been where you are. It gets better! Don’t give up.

Pain during ovulation

I had an appendicitis scare and turns out I think I was just ovulating. Not diagnosed with endometriosis yet, but it’s being investigated. SEVERE bloating (someone asked me if I was expecting), pain on my right ovary, and unable to urinate left me making several trips to the ER unfortunately. Does anyone else have bad pain on their fertile days? I’ve always have had pain on my period enough to faint and puke, but never on my fertile windows.

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Comments 7

Last reply Nov 10, 2024

Rh

Yep! My ovulation pain is severe.

Endometrial cyst

I have suffered with intense period pain for all my life, but now at 45 it got worse. I had a scan and it came out that I have a cyst which could possibly be an endometrial cyst and that I might have endometriosis. I have been suggested to get hormonal contraceptives to get it under control, but I am not comfortable with that. Any experience?

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Comments 2

Last reply Jun 4, 2024

Ma

Thanks for the detailed explanation. I m seeing another doctor just to see if the treatment would be the same and then decide. Glad to know that it worked for you! My real big concern is that this hormonal medication may trigger cancer 😞

Endometriosis

How long after having endometriosis removal surgery did you have a period? It’s been a week and a half and I haven’t had mine. I bleed after surgery for a week. But I’m late and I know I’m not pregnant.

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Comments 5

Last reply Jun 10, 2024

𝒮

Really it comes down to when or if ovulation occurs and the extent of the surgery. Bleeding or spotting after surgery is completely normal, but it can take a little while for your body to adjust and get back to normal where ovulation and period is regular.

Late period due to endo laparoscopy?

I have been reading that a late period is normal but I have also read that people do start on time. I had my surgery the 8th and I’m now six days late for my period. I’ve had no signs of starting other than my boobs and nipples hurting. I was suppose to ovulate the day of surgery but didn’t track due to the procedure but had sex the day before. I’m just wondering when everyone else’s period came back and if I shouldn’t be worried right now.

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Comments 6

Last reply May 14, 2024

Al

Did your period ever start? I know when I had my laparoscopy, I started my period on time, but I was also on birth control so it just came when it usually did.

Anyone with endo have these symptoms? (Very long read)

Hi everyone. I hope this reaches somebody. I’m having laparoscopic surgery soon to find out if I have endometriosis. I’ve always had very normal periods and came on time. And I mean I knew exactly what time it would come every month, every time. In September of 2023, I started having different pains. It wasn’t period cramps, it was like sharp pins and needles feeling. While it was painful and uncomfortable I didn’t think much of us. Come October and November, the pain was absolutely unbearable and the most excruciating pain o e ever felt I my entire life. Like someone was stabbing me with a hot knife. (I’m going into detail about where my pain is and hope this isn’t too TMI.) But the pain was in my lower abdomen and both sides of uterus. It was shooting straight up my 🐱, butt, and also occasionally my lower back would get a little sore and I would get the pins and needles feeling then too. Bowel movements and urination was painful. I have so much pressure down there when I do. I also got very nauseous which wasn’t too out of the normal, but I have the most intense burning in my stomach. It feels like someone put icy hot and lip plumber in my stomach. I’ve had heart burn before but this is completely different. I said enough was enough and went to see my Gynecologist. She put me on constant birth control to help control the pain, but I just felt so gross all the time. (Meaning I skipped the sugar pill and went straight into a new pack.) I was also told I would experience breakthrough bleeding but I ended up having a full-blown period for over two months. It was like the Pacific Ocean every single day, not just some “light bleeding.” After a while I was referred to a surgeon to help me figure out a plan. The appointment I had waited over 2 months for was disappointing. I felt that I had been dismissed and was treated somewhat poorly during the visit. She basically told me it was bowel related. She focused on the few but MANY symptoms that I had. I feel like I’m going crazy and felt like I was told that I was crazy. Also I’ve gotten checked multiple times for cysts in the past and it’s come back clean every time because I had extremely painful cramps. I do have IBS but it’s much more under control than in the past. This is nothing like anything I’ve experienced with IBS. Pretty much all these symptoms happen right before and during my period. I’m just hoping someone with endo had a similar experience I did, or if they have any advice or thoughts to share. I’m sorry this was so long I just don’t know what to do anymore or what to think.

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Comments 2

Last reply Apr 25, 2024

An

Hiiii! I was suspected endo after constantly in pain, painful intercourse ect but it was finally confirmed during surgery (the only way i was told would be confirmed) because my cyst was so big it was suffocating the other one, long story short i was prescribed “orilissa “ by my doctor and that helped a ton! Not a long term fix but definitely worth a shot asking your doctor about it!

TTC anxiety with endo

Anyone else in here ttc? I was diagnosed with endometriosis last November. I've been off birth control since then as we've been trying for a kid. We only actually started putting effort into it last cycle, so this is my second cycle. We were dilligent this cycle, but I'm terrified because my pain has come back this month and it feels like it did before the surgery to remove the endo. I'm currently in the two week waiting period and I'm having such a hard time. I'm terrified the endo is back and its going to make things harder or impossible. I'm just looking for support, words of wisdom, successes, anything positive anyone wants to share. TIA

Upvotes 3
Comments 1

Last reply Apr 21, 2024

Sn

God bless.. And baby dust to you

I’m scared! Please help 🙏🏻 TMI

Sorry for the TMI in advance. 🙏🏻So Idk if this is even the right group but I had my Pap smear on Friday. Sunday I had light spotting. Overnight it got heavier and it’s bright red. I’m 9 days until my period is due and I’m worried this is abnormal. I’m cramping and have bad lower back pain.😓 I think it’s too much for implantation bleeding. Doctor has no availability today. Should I be concerned. I had abnormal pap and colposcopy done in 6/2022. Has anyone had this happened?!?!

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Comments 3

Last reply Apr 10, 2024

Ev

Look like your period has came

Im nervous i wont be able to get pregnant successfully.

My endo has only gotten worse and made working damn near impossible. My cramps are so bad i throw up and passout shaking. I bleed in-between cycles and its even caused my colon to bleed. I see the GI this month. Im hoping itll be good news and they wont find endo tissue in my GI tract either. Im really scared. Ive only had miscarriages. I turn 24 this year and id like to have a baby one day. Im tired of this mental battle. What else can i do? Ive changed my diet as well and its helped a little but not by much.

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Comments 5

Last reply May 22, 2024

Mi

My best friend had endo and she had the surgery last year she is now carrying her son she is due in September. I have endo and I just had surgery I’m hoping I will carry another child but I had stage 4 with blocked fallopian tubes.

Please help!! Severe bloating..

My tummy is normally flat i'm really worried. I've always had on and off bloating throughout my cycles. So now I'm on a pathway with my dr for suspected endometriosis. However i just feel like my bloating is getting worse and worse each month. I know there is such thing as endo belly but i didn't think it was this bad, and have never seen someone with it this bad..Please some advice, i look like i did when i was 6 months pregnant, its rock hard and none of my clothes fit me. What do i do??

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Comments 3

Last reply Nov 16, 2024

Ha

I'm having something similar - what are you other symptoms? I don't have particularly heavy or painful periods so I'm unsure. I hope you're better!

Laparoscopy + hysteroscopy

Hi all,I have a laparoscopy and hysteroscopy coming up, have my pre-op on the 17th April. I’m REALLY worried about pain during recovery. I had a c-section 2019 and found the healing from that pretty easy but is this surgery gunna hurt more?😩

Upvotes 1
Comments 0

Last reply Apr 3, 2024

Treatment

Hello all,So I was diagnosed with endo back in 2018, the dr said it was “light” and that he had burned it when we did the laparoscopic surgery. Everything seemed fine and then fast forward to 2022 when I got my first period after having my daughter, pain started coming back, I went to two different gynecologists (I’ve moved since 2018 and had to look for new care team) and both said we should do oral contraception to “quiet the ovaries and prevent the pelvic pain”. I’m still not sure that’s what I want to do. Any insight on what you guys are on, what you guys have done? Thank you!

Upvotes 0
Comments 7

Last reply Jun 10, 2024

𝒮

You can improve pain other ways than birth control or becoming pregnant, unfortunately the best is having laparoscopic surgery to remove what Endometriosis is present as well as adhesions that could be causing pain. Sadly, it something that’s likely needed to be repeated to keep at bay. Birth control can help control it in ways, just like pregnancy, but that’s not an option for every female.

Help post

Can anyone help me with explaining this? It takes ages to have an appointment with my gynaecologist i can not understand what’s going on , trying to conceive for 2 years and now diagnosed with this i am heart broken, am i ever get pregnant or not😢

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Comments 0

Last reply Mar 24, 2024

Endometriosis and endometritis

Has anyone been diagnosed with both? I have 3 of my own kids and never had issues conceiving and was trying to be a surrogate. We did one transfer which ended in a miscarriage at 7 weeks. We did another transfer which failed to implant. The doctor recommended a mock cycle with ERA and we just got the results yesterday and it determined that I’m not receptive and have both endometriosis and endometritis with lots of inflammation. Obviously the fertility doctor can’t give me to much info but I can’t see my regular OB until June :(Just trying to understand what all this means and if I will ever be able to have another baby of my own. I am just in total shock right now because I don’t have any symptoms…

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Comments 4

Last reply Mar 24, 2024

Br

They toss this around like candy these days… my SIL has gotten pregnant twice right away. Her last was a 16w miscarriage. She had testing done just to find a root problem and there isn’t any. They now say she has endometriosis and can have surgery to remove the scar tissue which gives a less than 10% difference in her health and TTC and future miscarriages. I myself, said my periods were very painful and immediately told oh probably endometriosis.