Hi I'm 26, and was diagnosed with endo six years ago by laparoscopy. It took 3 years to get a diagnosis. I was only taken seriously at the point where my pain was so severe I could barely walk, and had stopped going to my University classes and working.
The gyno said he took off as much as he could during surgery, but that it was to dangerous to touch certain areas with the laser for fear of damaging my fertility and internal organs.
After surgery I underwent chemical menopause as the next stage of my treatment. The pain dissipated over the course of the treatment. But, three months after it was over my daily pain returned and so did my excruciating periods.
After this it was recommended that I take the pill consecutively so that I would no longer get a period. This worked, I no longer have periods, but my pain level in my pelvis is just gets worse and worse.
I attempted to stop my pill on two occasions, both subsequent periods landed me in emerge. The first one was so bad I could not remain conscious because my vagus nerve was shutting down my system because my body could not tolerate the pain. I was taken to hospital in a semi-conscious state by ambulance. My poor spouse was absolutely terrified. Over the years I have had many ruptured cysts and hospital visits, where I am always told that I was just going to have to expect this with my endo.
Yesterday, I had a Mirena IUD put in, as the next phase of treatment. It is supposed to mimic pregnancy and therefor shrink the endometrial cells. I am skeptical.
In any case, my real question is about sex. I have not experienced pain free sex since I was 18. Yay, I had a whole six months of real sex! I remember what it feels like to have pain free sex... wonderful. And I would like to know if anyone in the community has come up with a solution or treatment for this issue. Please help, I'm at my wits end.
I too have painful sex. However, my pain really lies with deep penetration only. So I can get my freak on, survive, as long as we dont get wild and crazy! Which isnt too fun, and I can imagine as it frustrates me (kinda) I know its probably tenfold for my husband who loves sex way more than me. So far he hasnt shown frustration, but its gotta be there.
BUT...I do have questions for you. Have you discussed this discomfort with your dr.? Because you know endo and other diseases/disorders can cause this pain. What kind of dr. is treating you? I dont agree with your treatment plan, I have the same concern you do. I think mirena is supposed to mimic pregnancy in that it est a hormonal change, just as pills do, however, it doesnt remove endo! Thats crazy! Are you in the medical field? Just curious, as your terminology doesnt seem to be that of the lay...
As im sure youve read, its best to treat your endo by an eno specialist. First of their experts so tbey have more knowledge than the general gyn. Sec they do excision of endo which removes all of it, rather than cauterizing which removes the surface only, thus allowing the endo to resurface. another benefit of seeing a specialist is that their expertise affords them to remove the endo from anywhere...bowel, bladder, ureter...etc. Where do you live, what state? Weve gotta get you to a specialist girl!
Lastly, reading your post was like de ja vu because its almost my story exactly! My endo was confirmed via lap by my gyn. The endo wasnt removed sec to the, location and fear of damage fo the vital organ (its covering my ureter), he advised I start Lupron, I deferred and chose a continuous pill (seasonique), started the damn pill, the pain seemed worse, it stopped those horrible periods though, I stopped my pill which brought on a period YIKES!, my gyn office again pushed changing hormonal therapy, at that point I stopped and saw a specialist. I said enough is enough. These pills help mask it, but they dont solve the problem that's here now!
I have discussed my pain with multiple gyno's and my gp. I get the same response every time. I have endo, I'm just going to have to come to terms with the fact that penetrative sex is painful, so I should just stick to oral sex and mutual masturbation. I find this to be an unsatisfactory answer. I have also been told to "learn how to have pain free sex," with no further explanation.
I do have vaginal endo, I had an exam to see if the tendons around my vagina have hardened, which is the most common cause of this type of pain. As it turns out they have not hardened or become tight. So, that leaves me in the dark again.
Since being told this I have begun to research Vaginismus, there are different types, but I suspect that I am of the type that has involuntary muscle spasms because of previous painful sexual experiences. This disorder is a physical reaction that can be treated with both physical therapy and a sort of retraining of your thoughts on sex. The symptoms of this disorder are bang to mine. Anything that enters my vagina is painful even a finger or tampon, sex feels like sandpaper is being rubbed inside me. It burns and is excruciating. I believe that I must have some sort of combination of vaginal endo and vaginismis. Essentially that the pain of the endo has caused the involuntary spasms of vaginismis.
(I have of course been tested for every possible bacterial cause, and PID... never had any of that)
Unfortunately, this is a hypothesis that I have come to on my own. I have seen three different gynos/ surgeons. The one I'm seeing now is truly wonderful, but I still feel that I am not getting the answers that I want. I had never even heard of endo specialists until I started my own research. I live in Canada, by the way, and have never heard of any surgeons doing excision. And it has never been offered to me as a treatment option.
I should clarify, the Mirena IUD mimics pregnancy hormonally, which shrinks the endometrial cells not eliminates them. It is a form of suppression treatment, similar to Lupron. It is a way to suppress the cell activity, so as to give the chance to "start from scratch." Most definitely not a cure.
In terms of the painful sex, my spouse is so patient and understanding and supportive, but I am furious and frustrated. I like sex, a lot, and i would like to be able to have it without feeling like my insides are filled with fire ants!
I am not in the medical field. But, I do have access to peer reviewed academic journals, and have been doing research for a very long time.
Thank you for your support. I would be interested to know how excision has worked for other patients long term. And also if anyone has ever undergone Vginismis treatment who also has endometriosis.
Theres a girl that posts on here a lot. Her screen name is "ticked". Ive seen from her posts and advice to other endo chicas that shes seen excellent docs in Canada. Thats where she lives also. She has/had stage IV endo amongst other diseases that usually accompany endo. Shes a wealth of info. Im sure u can gather from her posts who her docs are, or you can inbox her.
I am going to get a little personal here, but when you speak of painful sex is it on penetration or just period???? I to had always had painful sex and diagnosed with endo but it was a mild case so they didn't think it should be causing the pain. So I went to the a new gyno and when he was do an exam he noticed that my external genetalia was a little malformed so he took a biopsy. Let me just say OUCH even with it being numbed. That is just not someplace you want biopsied. Sorry off track anyway he biopsy showed that I have liched sclerosis which basic causes everything in that area to narrow causeing very painful sex especially on penetetration. So i had to put steriod cream on twice a day for two week and then twice a week forever. But since then it has helped so much. I also was diagnosed with Interstitial Cystitis. I am preachin on that like its no bodys business. Because since I started treatement I feel like a new person. All my symptoms were very similar to endo and I had endo lasered off. The only major difference is that I had to pee ALL the time. Had urgency all the time and even after i went I still had to go. I am not saying that you have either of those conditions. i am just letting you know about my experience of what happened. its something to look into. msg me if you have any questions. I am out of work for like 10 more days on FMLA on something unlrealated. So im here if you need anything!
Hi there u gals seem to be speaking my story...only i hav pain doing n 2 when on my perios (periods).its excruciating like ripping something but thankfully lasts 1st day at most. And sex....i ddnt let my husband penetrate first 6 mnths aftr marraige...which was possibly vaginismus and i learned to relax aftr a year almost...to the point of Wanting to enjoy the thing ...bt thats occasional...dnt knw what works or dsnt...sometimes its painful with any possible lubricant used and at others its just fine.
i havnt been able to figure out any specific time of cycle when that happens!
But blaz26: the trick for vaginismus is Relax Relax and Relax at that moment.
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