Endometriosis Support Buddies

[jules87]

Hi there! I'm Julia, an endometriosis sufferer and chocolate addict from Nebraska, U.S.. I'm 28, married almost 8 years, no kiddos.

I'm just looking for buddies that are going through similar troubles as me, mainly on the endometriosis front. It can be such a pain, literally; and at times I feel like it might actually drive me crazy.

Please, join me! Swap horror stories, whine, laugh, and whine some more.

As a teen my periods were heavy, lasted 7 days, and my cycles ran 21 days. Now days, my periods are very heavy & painful, last 7-10 days, with a 28 day cycle. Basically I've always been regular but far from normal.

I had a laparoscopy done in March of 2015; the doctor found 3 separate areas of endo, two on one ovary and one on the other. The laparascopy helped a little bit with the pain. Before the laparascopy the pain during my period would start (intensely) in my low back, encompass both hips, and I also had pain on my inner thighs... of course on top of cramps.

Now the pain is mostly in my low back and cramps, though this past cycle it was in my right hip as well. Heaviness has gotten worse over time. This last period, I had 3 separate OMG moments where I thought I'd leak through everything. I'm getting to the point of wanting to take a sick day once a month just to avoid the possibility of that happening.

Your turn!

 

[jules87]

Has anyone treated their endometriosis with Progesterone cream? I've been researching this a lot and want to give it a go.

 

[Unlucky41]

Oh Jules you poor thing. What stage endometriosis do you have? I was diagnosed 3 years ago after our RE wanted to find out why my egg quality was so bad. They found stage three endometriosis my answer for 6 years of grief.

My periods are also so heavy from when I was a child always so scare of leaking and embarrassment. My mum always told me it was normal but it wasn't. I would had to go to the toilet every hour day 2 or it would leak everywhere. Friends thought I was weird! Yes the cramping is so bad I usually just curl up and try to sleep.

I have recently seen a nathropath and taking vitex and nac for endometriosis. Google nac it seems to be very positive for endometriosis.

What is your current plan? Still using clomid or just trying with no medication. If you are interested in my full story please visit my journal.

 

[jules87]

I wasn't told what stage of endo I'm at. My doctor likes to play things down as much as possible. I get why he thinks that is helpful, but it's irritating at the same time. I will definitely look into the NAC.

At the moment we aren't trying, because I'm doing Botox treatments for migraines. I plan to do that for about a year. If my migraines are significantly better we hope to start TTC again. Our next step is Clomid with artificial insemination.

Thank you for the post and the tips!

 

[Unlucky41]

Oh when did the migraines start. Did the doctor tell you why you have it so bad? Botox a common treatment?

This period my pain level was manageable and my period wasn't as heavy. Not sure what it is related to as I am having so much supplements but suspect NAC could be helping. Do check it out!

 

[jules87]

I've deal with migraines since I was a kid. But, the chronic migraines started about 5 years ago. It took forever to find a good doctor.

Botox is fairly common for treatment, but you have to go through all the other options first. (Pills, therapy, testing, etc.) We actually haven't found a specific reason other than my Trapezius and neck muscles are almost always tights which then causes headaches for me.

Yay for a slightly easier to deal with period!

 

[mama.mouse]

Hi Jules! I'm Gina and I live a long way from you in South Africa. I am 27 and was also diagnosed with endo in 2014 although I suspect I have had it since I was about 16. Growing up I had godawful periods. On more than one occasion I leaked through onto my school dress and the pain was excruciating. My legs went lame, I often passed out, had to be sent home from school and on one occasion I was even hospitalised but everyone kept saying it was normal. I knew it wasn't though.

I saw 4 different docs before my gem of a gynae picked it up. Gynae says it was about stage 2-3. By the time I went to see him I had a sizeable cyst on my left ovary and a complex (2 in 1) cyst on my right that was almost 10cm. He says "How have you been walking around like this!" Had a laparascope in Dec 2014 and he said everything looked good and not to worry but a month later a new cyst had already developed. He put me on treatment for a month to shrink it and suggested we started TTC while my ovaries were in good shape. My mom had a hysterectomy at 29 due to severe endo so he didn't have to tell me twice! And here we are!

Endometriosis really is a terrible disease and we are just expected to be silent sufferers. So nice to have ladies to talk to.

 

[Unlucky41]

Mama congrats on conceiving naturally with endo. Did you take any supplements etc?
Are you trying for number two or too early?

 

[mama.mouse]

Mama congrats on conceiving naturally with endo. Did you take any supplements etc?
Are you trying for number two or too early?

Hi hun, we haven't gotten it right yet! Going on 15 months trying now. I have already tried Clomid, Femara, Ovitrelle shots etc but no luck. I went to see an RE and he put me on DHEA, Vitamin D3 and metformin. I also take natural supplements for stress because I suffer from chronic fatigue because I work in medicine. As if the universe was not cruel enough, we don't have the strongest swimmers on our team.

Jules you mentioned progesterone cream! As a result of endo my oestrogen and progesterone are imbalanced so my RE put me on natural progesterone cream but it gave me TERRIBLE depression and anxiety! Apparently it has that effect on 3% of women.

 

[Unlucky41]

Mama sound like you are in good hands though. How are your cycles like? Is your AF still heavy and painful?

This is our 2nd cycle trying naturally but before that was trying ivf with no success. We are going backwards but trying to keep the faith. Just need one good egg.

Is your husband taking any supplements?

 

[mama.mouse]

They are like clockwork! Except this cycle I was one day late which obviously gets you super excited and then it came early this morning They are not as painful as they were when I was in school or maybe its just that I am more used to it and have access to stronger pain killers haha It's hardly heavy at all though. I had a mirena IUD for 5 years from when I was about 20 and that really helped.

Hubby is on something called Prelox. He stopped taking it for a while and he is back on it now.

I'm sorry you haven't had any success yet. Did you only do 1 cycle of IVF? How was your experience with a naturopath? DH and I are both going to see one in Sept when we are finished these 3 rounds of Clomid.

It's a tough process. Hubby joke that we will just adopt like our dogs and have a bit orphan family but I want to be pregnant with at least one to experience it you know? With my age all of my friends are just falling pregnant so easy.

 

[jwilly]

Hi Jules! I am also Julia hehe. I have not been officially diagnosed yet, but I have always suspected that my severe pain and our trouble conceiving is due to endometriosis.I had extremely heavy and painful periods in highschool, but started BC when I was 16 and they "calmed down" so to speak. Now, my periods arent super painful, but my ovulation pains (as well as day to day pains) are debilitating. I am going back to my RE in the fall to schedule my first lap. We did find out I was pregnant in April, but the pregnancy was ectopic. Upon further research, I found that ectopic pregnancies can be more common in women with endo?? I'm not sure if this is true, but I am worried now that we will be unable to conceive again, or that we will be faced with another ectopic. Right now hubby and I are waiting for the go ahead to start trying again. Interested in the talk of the progesterone cream! Does this help with the symptoms? Or how does it work?

 

[dogmommy]

Hi all! I was diagnosed with endometriosis last year. I was never told the stage. I had terrible painful periods as a teenager and as soon as I went on birth control they went away. Now fast forward to June 2014 I got married and stopped taking bc and the periods grew worse and worse each time. So last year my gynecologist decided to do an ultrasound and they found two endometriomas on both ovaries. So in Jan I had a lap and they took out endometriomas and fixed a blocked tube. My period pain is much better! Well now it's going on 6 months with still no luck. I've been ovulating every month but something is still wrong. We've set up a consult next month for ivf!

 

[mama.mouse]

Hi Jules! I am also Julia hehe. I have not been officially diagnosed yet, but I have always suspected that my severe pain and our trouble conceiving is due to endometriosis.I had extremely heavy and painful periods in highschool, but started BC when I was 16 and they "calmed down" so to speak. Now, my periods arent super painful, but my ovulation pains (as well as day to day pains) are debilitating. I am going back to my RE in the fall to schedule my first lap. We did find out I was pregnant in April, but the pregnancy was ectopic. Upon further research, I found that ectopic pregnancies can be more common in women with endo?? I'm not sure if this is true, but I am worried now that we will be unable to conceive again, or that we will be faced with another ectopic. Right now hubby and I are waiting for the go ahead to start trying again. Interested in the talk of the progesterone cream! Does this help with the symptoms? Or how does it work?

Hi! My endocrinologist says that is helps with PMS so like pain, bloating, sore boobs, bitchy behavior etc. he says if you think of it as progesterone so pro-pregnancy. You need to check your progesterone levels first though. Mine was quite low and I took all natural progesterone cream but it did make me feel very low. Could have been other things around that time I guess so gonna give it another go this month when start the clomid again. Make sure the progesterone you get is all natural

 

[jwilly]

Thanks mama! I will look into that. I did have my progesterone levels checked earlier this year, and was told that they were "fine" but upon further research, they seemed lower than what many other people out there had been told were appropriate. Can't remember the number off the top of my head now of course... durr

 

[Unlucky41]

They are like clockwork! Except this cycle I was one day late which obviously gets you super excited and then it came early this morning They are not as painful as they were when I was in school or maybe its just that I am more used to it and have access to stronger pain killers haha It's hardly heavy at all though. I had a mirena IUD for 5 years from when I was about 20 and that really helped.

Hubby is on something called Prelox. He stopped taking it for a while and he is back on it now.

I'm sorry you haven't had any success yet. Did you only do 1 cycle of IVF? How was your experience with a naturopath? DH and I are both going to see one in Sept when we are finished these 3 rounds of Clomid.

It's a tough process. Hubby joke that we will just adopt like our dogs and have a bit orphan family but I want to be pregnant with at least one to experience it you know? With my age all of my friends are just falling pregnant so easy.

Hi Mama

No we have been through ivf 6 times. We had a daughter street ivf5 however when we went back for number two early this year no eggs were retrieved hence RE told us to stop. Please read my journal if you have a free moment hehe.

Would you try IVF? It does bring me hope but very expensive and very emotional. I couldn't handle any more bad news so decided to get healthy and see how things go. Have to be prepared to accept I might only have one child.

Definitely understand that you want to experience being a mum that is what God made us to be. It is so hard to accept that we can't produce just one good egg.

 

[mama.mouse]

Oh wow 6 times! We went to a fertility clinic when we first started trying (my doctor suggested we try get the ball rolling sooner rather than later) but it was so expensive. We couldn't afford to do any of the treatments not even the entry level ones. We weren't prepared to TTC. We were told it was a possible "now or never" and everyone said oh that's just what doctors say but here we are almost 1.5 years later and I'm so glad I listened to him!

Our plan is to do these last 3 rounds of clomid and see if that works and if it doesn't, homeopath and try his thing till the end of the year and if we are STILL out of luck then we will try raise money for IVF

 

[jules87]

I am so excited to see a few new "faces" here! Welcome to the group!

Sorry I haven't posted in a bit. We decided to take a last minute vacation over the 4th of July. Since we got back I've been playing catch up at work and at home. It was a great vacation though! We went to Colorado Springs and Denver.

jwilly- It's always nice to find another Julia! I also was told by my doctor that my progesterone was fine. When I requested a copy of the results I found I am on the very low end of the "normal" range.
The Progesterone cream is supposed to help with PMS like mama stated. I have done a lot of research on links between low progesterone and endometriosis, and also the links with infertility. A typical treatment of endometriosis is the birth control pill, especially the mini pill which is all progesterone (synthetic). I personally feel better using an all natural cream than a pill. Like mama said, make sure it's all natural if you decide to try out the cream.
Good luck in continuing ttc!

moma- I have been told that the Mirena is great for endo before, it's interesting to meet someone that can actually say they know it helped. Maybe some day I'll give it a try. I think we might be headed down the road of lots of adopted dogs as well. Haha. My husband would love it, but I don't think I could deal with all the hair!
What supplements do you use for stress? I started seeing a therapist for depression a couple of months ago. She thinks I deal with anxiety and depression. I've just been set up with a new one that will do EMDR therapy with me. This is supposed to "desensitize" you. Mostly emotionally, but I"m hoping it will help with pain too... I have come across some stories suggesting it can.
It sounds like you guys have a great plan in place. Good luck! I look forward to hearing your story as you go.

Unlucky41- I'm so sorry you have gone through IVF 4 times. You are a very strong person! I will definitely be checking out your journal when I have a bit more down time.

Dogmommy- I'm surprised they were able to see the endometrioma with an ultrasound! I've been told that's pretty rare. As much as it sucks having endo, at-least you had confirmation before committing to the laparascopy.
Have you had your hormone levels checked? What about your husband, any tests? (Sorry if you said already, I didn't catch it.)


I'm gearing up for a painful and tiring week, aka- AF will be here any time. . So far I've been dealing with fatigue, constant headache, heightened sense of smell, nausea, weakness, and of course moodiness for the past few days.
How long does each of your periods usually last? (TMI question, sorry) Mine usually last 10 days. It's freaking annoying! Every once in a great while I'll have one that lasts just 7 and I just feel like dancing!

 

[Unlucky41]

Jules my period used to be 7 days but since taking herbs and supplements for 2 months it is now at 5 days. It has only been once at 5 days so will let you know what happens in 9 days time when mine is due.

Are you taking anything to help with the pain etc?

 

[jules87]

I just take Pamprin Max for the pain, and use Icy Hot patches on my back. I will actually start using the progesterone cream this cycle too, hopefully that helps some.

My cramping started yesterday and is still present. Usually I don't get cramps until day 3, super annoying! I see chocolate in my future.