I notice I get lip HSV multiple times a year, probably 1 every 2-3 months. I am stressed but this seems very unusual. I feel sluggish and weak. No energy. I have multiple chemical sensitivity so already have a hard time processing environment. Are we sicker wirh LE?
Lymphapress pants just redirect fluid to the vulva. Are pumps available for this area? Compression garments aren’t tolerable due to nerve damage in pelvis. Swell spots cause nerve pain in R thigh.
Pelvic edema is fluctuating and at its worst causing immense pressure sensation with burning at an area where endometriosis/ fibrosis was excised from abdominal wall.
there is times when a spongy crepitus can be palpated in pelvic area associated with intense inflammation. I have endometriosis histiry and worry this is endometriosis and not lymphedema exclusively. There’s a hard “shell” I can palpate deep in the pelvis when fluid will build up under and spread outward from there going up to ribcage and never crossing over into L abdomen.
Could this be a lymphocele? LE therapists are clueless what this is.
Can endometriosis cause this degree of edema?
Can the fluid be drained to accurate diagnosis?
Estrogen makes this much worse. Progestin decrease edema and pain.
I’m losing so much hair in surgical menopause and cannot tolerate adequate amount of E bc of endometriosis. I want to tolerate synthetic combined pill form of hormones as it increases SHBG, decreasing free Testosterone which will improve acne, hair loss, oily scalp/skin, excess body hair, guy stank /BO.
I tried lowest synthetic hormone pill actually indicated for menopause (starts with F) but it caused hair loss shed like TE and the hot flashes and sweats returned and were brutal. I tried LoLoestrin and it caused the same. All of this after unsuccessful trials of higher dose BC pills - Sprintec and Diane 35, the latter causing severe vulva pain (it’s an anti androgen)
I’m hoping to combine some synthetic form of hormones wirh HRT like patch, injection or gel with testosterone injections to prevent negative side effects of the synthetic pill and give me balance to simulate what the ovary woukd be doing. Ive thought about vaginal rings Annovera too to combine with HRT.
I have a history of PCOS with elevated adrenal androgens (DHeA, DHEAS), DHT and cannot tolerate any anti androgens or DHT blockers. Even natural DHT blockers cause issues.
Has anyone in menopause done this successfully? Ive lost my life (disabled) to endometriosis and this would be a miracle if it worked.
I put the flair as hair loss bc that’s why (in addition to endometriosis control) I want to tolerate synthetic combined pill form of hormones as it increases SHBG, decreasing free Testosterone which will improve acne, hair loss, oily scalp/skin, excess body hair, guy stank /BO.
I tried lowest synthetic hormone pill actually indicated for menopause (starts with F) but it caused hair loss shed like TE and the hot flashes and sweats returned and were brutal. I tried LoLoestrin and it caused the same. All of this after unsuccessful trials of higher dose BC pills - Sprintec and Diane 35, the latter causing severe vulva pain (it’s an anti androgen)
I’m hoping to combine some synthetic form of hormones wirh HRT like patch, injection or gel with testosterone injections to prevent negative side effects of the synthetic pill and give me balance to simulate what the ovary woukd be doing. Ive thought about vaginal rings Annovera too to combine with HRT.
I have a history of PCOS with elevated adrenal androgens (DHeA, DHEAS), DHT and cannot tolerate any anti androgens or DHT blockers. Even natural DHT blockers cause issues.
Has anyone in menopause done this successfully? Ive lost my life (disabled) to endometriosis and this would be a miracle if it worked.
I put the flair as hair loss bc that’s why (in addition to endometriosis control) I want to tolerate synthetic combined pill form of hormones as it increases SHBG, decreasing free Testosterone which will improve acne, hair loss, oily scalp/skin, excess body hair, guy stank /BO.
I tried lowest synthetic hormone pill actually indicated for menopause (starts with F) but it caused hair loss shed like TE and the hot flashes and sweats returned and were brutal. I tried LoLoestrin and it caused the same. All of this after unsuccessful trials of higher dose BC pills - Sprintec and Diane 35, the latter causing severe vulva pain (it’s an anti androgen)
I’m hoping to combine some synthetic form of hormones wirh HRT like patch, injection or gel with testosterone injections to prevent negative side effects of the synthetic pill and give me balance to simulate what the ovary woukd be doing. Ive thought about vaginal rings Annovera too to combine with HRT.
I have a history of PCOS with elevated adrenal androgens (DHeA, DHEAS), DHT and cannot tolerate any anti androgens or DHT blockers. Even natural DHT blockers cause issues.
Has anyone in menopause done this successfully? Ive lost my life (disabled) to endometriosis and this would be a miracle if it worked.
I have AGA but wondering if vascular compressions, poor blood flow can contribute to scalp hair loss? Did a stent help hair loss?
I see posts for who’s the best endo surgeon in some form or another but don’t see posts asking this question for these specific reasons. I’m so tired of the expectation that we’re to remain quiet, keep our head down, just be glad we have access to care or be intimidated to speak out due to retaliation or bc this doc wqs recommended here... What’s the point of access to care when it disables us - mentally or physically or both? If a story like mine had been shared, I would not have been butchered and now disabled. I’m ready to share. Who’s in?
There was a woman on FB who did a PSA to notify other women about her harmful experience with a famous surgeon and it inspired me to ask this question.
I hope to hell I can get help someway but cannot even get access to stabdard Gyn care bc of what was done to me.
I urge everyone to find the courage to tell your story so others won’t be harmed . ❤️
If so do you have confirmed lymphedema wirh ICG or other means or is it swelling wirh cycles? Where is your swelling? I have swelling in my legs, R oelvis (where worst pain is) and mons pubis/R labia . I definitely have genital lymphedema but my legs I’m not sure - is it endo inflammation, may Thurner, lymphedema … r pelvis /L leg will swell worse wirh periods of increased estrogen.
If you do, where do you have it and is it constant or only on periods? I have severe endo and no organs now but my endo is relentless. What’s your story?
Developed thrombosed hemorrhoid and saw colorectal surgeon who dud incision to drain /remove clot from L side of rectum. I told him about my genital/leg/pelvis KE prior to procedure and asked if it would worsen LE. He said no but my L leg and labia increase in edema that evening and the rectum feels worse 40 min after abd 2d since wuth increased edema, not better like I read it should occur with clot removal (immediate relief).
He placed a suture and I think it’s too tight. I did sitz bath as instructed but that jyst increased genital edema. Anyone have more edema after incision on non affected areas?
Does you get LE of anus/rectum? Cant decide what f it’s bad hemorrhoids or edema from LE causing rectal bulging with BMs.
I had surgery bc endo/scar was affecting a nerve. He said he would help me. He disabled me by making nerve pain worse among other severe issues he induced, now affecting 3 areas per MRI. Meds don’t help. Where are you guys going if nerves are affected? Would a peripheral nerve surgeon be able to treat this?
A LE surgeon told me LVA and related surgeries will not treat /help genital LE. He said once it gets very advanced he could do debulking surgery with liposuction? I’ve read horror stories about having parts of genitals be cut out /removed? Is this really my reality? Currently can’t tolerate compression/swell spots.
A MD told me she would inject ICG dye in web spaces of feet, around or above knee and into mons pubis for LE of legs, genitals. Does this sound correct protocol? I thought it would only be in the web spaces of feet. Thank you.
I’m trying to find a plastic surgeon who can do LVA for genital lymphedema. Most surgeons Ive contacted treat arms/legs but not genital (mons pubis, R labia). Also R leg affected. One denied me bc I’m pursuing ssdi which i don’t understand. Another said there are no surgical options for this. I can’t tolerate swell spots or compression leggings nor pump due to nerve damage on R side (thigh and pelvis). I’m desperate for someone to offer this so there might be something I can do to alleviate symptoms. Thank you.
Anyone have severe hemorrhoids bc of this and did stent help? My hemorrhoids are do bad I can’t reduce them manually , feels like I’m sitting on a marbles and rarely have constipation. I’m menopausal and think that might also affect rectal tissues, loss of elasticity in veins, etc. HRT doesnt help.
A hematologist told me iron increases oxidative stress and results in inflammation worsening endometriosis AFTER I experienced a flare during IV iron treatment. Researching iron shows it does cause oxidative stress which contributes to inflammation. Does iron make you worse? I need to start iron supplements but so worried it’ll worsen endometriosis.
Ive had all the workup in the world for this and seen multiple MDs. Definitely MT anatomy but was told swelling should start in my foot and increase proximal (do start in foot, then go to ankle, knee, thigh) for it to be MTS.
I have heaviness and tightness in my both thighs thsts worse with higher E dosing in L thigh. L GSV reflux. No LLQ pain really but if I take oral estrogen it will cause pain here. Definitely genital lymphedema and more fluid loss with massage measured from R Leg vs L leg with h/o R pelvic lymph node removal before swelling started.
Anyone else have no left sided pelvic pain but L and R leg edema? The genital lymphedema is the worst , the mons never really goes down, R labia more swollen than L. Compression hurts nerve pain.
Where did your edema start?
As title states. I need T but already need an anti androgen for hair loss/acne/facial and body hair. If I take an AA it causes genital atrophy and pain to worsen (on topical T/E to vulva)
I have a lot of adhesions from the last surgery that have nerve involvement and disabked me. Has anyone had success treating adhesions with anythjng - enzymes, supplements, drugs rhat actually dissolve scar tissue? I see PFPT and myofascial release has done all it can do it seems.