(Closed) Girls with endometriosis?

posted 5 years ago in Pregnancy
Post # 2
Member
279 posts
Helper bee
  • Wedding: July 2015

Hello there fellow endo sister ๐Ÿ™‚ soooo nice to see this post ! Yay for us getting married and going through the journey where most wait for . Sigh! I feel the same I was put on this earth to be a mother, I get married in JULY and we plan to start THE NIGHT OF! And my doctor also mentioned if after 6 months nothing happens we will talk infertility. So dreadful to think of . I usually don’t like reading the posts about infertility because everyone is different and it just brings me negativity  but can’t  help it sometimes. I’m VERRY positive and I like to remain positive it will happen SOON ! But there is still that thought that runs in my head of infertility. How old are you if you don’t mind me asking ?

Post # 3
Member
70 posts
Worker bee
  • Wedding: December 2014

Hey, Ive got endometriosis and last year had an operation to clean it all out. The disease was undiagnosed for many years for me and was quite advanced.  The drs advised me to have children ASAP if I wanted them but I still wasn’t married at the time. I didn’t want to have children till j was married. I got married at the end of last year and I am now 6 weeks pregnant. I know it’s still very early but I got pregnant the first month of trying. There is always hope. You must hold onto hope and always hope for the best. Sometimes these things do work out. Endometriosis is not a sentence of infertility, not always. 

Post # 4
Member
279 posts
Helper bee
  • Wedding: July 2015

HappyK:  wowwww!!! How beautiful your story is ! Makes me sooo very happy for you! I had surgery last year as well in january . I actually lost an ovary as well due to how bad endo was . And they advised me to also start ASAP and I didn’t want to without being married like you said . thats very excited to hear keeps me hopeful ! I have heard of happy stories like yours but I’ve always heard of more of the bad ones . I keep faith and hope very much on me . I can’t wait for my turn to come .

 

 

Were you on birth control ? If so how far in advance did you stop? Did you ladies start prenatals ahead of time?

  • This reply was modified 4 years, 9 months ago by  busybeetz15.
Post # 5
Member
422 posts
Helper bee

I’ve heard endo sometimes gets better after pregnancy, so yay for that! I don’t have a whole lot of advice because I’m not at the point of ttc, but I wanted to offer words of encouragement! 

On the point of prenatals, I take them even without plans of getting pregnant. It would be something to ask your doctor about, but from my knowledge those vitamins are great for women of our age (and condition) regardless of pregnancy status. The B12 in them is thought to help with mood stabilization as well, which is good if you are going off BC and having mood swings!

Post # 6
Member
70 posts
Worker bee
  • Wedding: December 2014

busybeetz15:  I used birth control from about the age of 18 till about 2 years ago. Like you it made all my symtoms lots worse.  I was on the birth control for many years. They say birth control is meant to help symptoms and help stop the endometriosis from advancing so much. I’m not sure if it did this for me though.  I started using prenatals in December. So a couple of months before I got pregnant. 

Post # 7
Member
778 posts
Busy bee
  • Wedding: February 2015

I have endo too. I never had any procedures done to clean it up, but they took a look a couple of months ago and it was fairly “clean”. I got married about 2 weeks ago and i started TTC that same day. I really hope i’ll conceive soon, but my doctor told me if Im not pregnant in 6 months, we’ll start treatment. Im also taking prenatals. I just hope things go well for all of us. (i also feel Im meant to be a mother and have baby fever for about 5 years) Good luck!

Post # 8
Member
656 posts
Busy bee
  • Wedding: May 2010

I have endometriosis too. my husband and I tried to get pregnant for 6 months before I had a laparoscopy that discovered stage 4 endometriosis. It was removed, and my doctor said that without that surgery I never would be able to get pregnant. Since then I have gotten pregnant twice, both with successful pregnancies. 

we plan on having at least a couple more, and I hope to not have any issues from the endo. 

Post # 11
Member
279 posts
Helper bee
  • Wedding: July 2015

Mrs.Massontobee:  yay! Hopeful soon you will be one of our success stories ! 

thanks to you Ladies for sharing such great tips and stories .So happy to hear such good things!

kaitlynaubrey01:  I think our young age will be in our favor. I’m 23 ๐Ÿ˜‰ only few more months and we will be on our journey ! I’m also scared to get off because like you said it can spread meanwhile we wait to get pregnan. This is my last month on it and I will have 3 cycles and after that TTC ๐Ÿ˜€

Post # 12
Member
1430 posts
Bumble bee

I have stage 4 endo, was never able to get pregnant after my lap so I did end up doing IVF and got pregnant successfully. You never really know how hard or easy it will be until you try. My best advise is to start getting acupuncture now.  It helped so much with my pain and making my periods more manageable and it has helped people I know get pregnant naturally who were having problems and feel like it really helped me with fertility treatments too. 

Post # 13
Member
2081 posts
Buzzing bee
  • Wedding: March 2013

kaitlynaubrey01:  I was first diagnosed with endometriosis when I was 17. I ended up having 7 operations from the time I was 17 till I was 24 to remove cysts and adhesions. The doctor put me on a strong birth control pill when I was 24 to give me some relief from my symptoms. I was on it for 5 years. After 5 years I came off of the pill and had little to no symptoms of endometriosis. Today, at 36, I’m 29 weeks pregnant. I think the pill helped my body to heal from the endometriosis but I also lost weight and ate very little fat in my diet. Exercising and keeping my body fat low also seemed to help reduce my symptoms. If you have very bad endometriosis or blockage of your tubes, the doctor can do a laproscopy and remove some of the damage. After the surgery, conception should be easier. I was told to have children early too. I did conceive in my early twenties but miscarriaged at 9 weeks. I wouldn’t get pregnant out of fear of not getting pregnant in the future. Best of luck to you.

Post # 14
Member
132 posts
Blushing bee
  • Wedding: October 2013

I have endometriosis and adenomyosis. I was on birth control for about 10 years or so. After coming off the pill, it took 11 months for my cycle to regulate (partway through that 11 months I had lap #4). My cycle regulated, I had two periods and got pregnant. I’m now 12 weeks along. The best advice I can give you is to make sure your body is ready to get pregnant. By that I mean look after your overall health. Exercise, drink a lot of water, get rest. Eat properly (consider trying the endo diet if you haven’t already), cut back on alcohol. Do everything you can to get into good shape from head to toe. That way, if and when you do get pregnant, your body will be in its best shape overall, which can only help support your pregnancy. Are you considering another surgery? It may be necessary. I had minor amounts of endo but a ton of adhesions, including one of my ovaries being completely stuck down.

Post # 15
Member
6291 posts
Bee Keeper
  • Wedding: August 2014

kaitlynaubrey01:  Hi there, I have endo, diagnosed at age 22.

First, endo isn’t unusual in girls of 16; it is just unusual for it to be diagnosed in girls of 16 as the average length of time between first seeing a doctor with symptoms and being officially diagnosed is 9 years, with many women waiting even longer. A study a few years ago suggests that girls are born with endo, and that it triggers whern you start your periods; in my case, I have definitely had endo sicne I started my periods aged 11, and they were always horrendous.

Second, how likely your fertility is to be affected basically depends largely on the severity/stage of your endo; the stats are as follows:

If 100 women without endo TTC for 1 year, 84 will become pregnant;

If 100 with minimal-mild endo TTC for 1 year, 75 will become pregnant;

If 100 with moderate endo TTC for 1 year, 50 will become pregnant;

If 100 women with severe endo TTC for 1 year, 25 will become pregnant.

Most women with moderate-severe endo wil require intervention of some sort (eg surgery), and most with severe/stage 4 endo will need IVF.

My advice would be as follows:

-Go back on hormonal contraception until you are ready to start TTC. This is because hormonal contraception keeps endo at bay/helps to suppress it, and without it, your endo will grow, spread, and worsen, meaning you could end up more likely to need help conceiving. The best methods are those which a) stop mestruation completely and b) leave the body quickly, so that you can start TTC straight away and don’t have a large adjustment period; so, the best options are the mini-pill/progestogen-only pill; the Mirena IUS; and the implant.

-Get a new gyno, one who specialises in endometriosis. Your current gyno sounds pretty clueless, and that is not good. A good endo specialist can much better advise you about treatment, and if you do need surgery, will be much better trained/equipped to perform it. She should absolutely NOT be advising you to come off hormonal BC, so please, find someone else who knows what they’re doing.

-Work on making sure you are as healthy and ready to start TTC as possible as a PP said; so, cut out alcohol (alcohol is also thought to exacerbate endo, as are certain foods inc red meat, and I have to say, I’ve noticed my symptoms worsen when I consume those things; it is thought to be due to oestrogen levels), lose weight if you need to, and consider the endo diet.

-Consider fruther surgery pre to TTC. If possible, try to get hold of your notes from your previous surgery to ascertain what stage it is (NB: frequently symptoms do NOT correlate with severity when it comes to endo, so the fact you have severe symptoms does not necessarily mean you have severe endo (I have extremely severe symptoms when not on BC, but only mild endo)) as if you have stage 3-4 (moderate-severe) surgery would be a very good idea, but it may not be a necessity if you only have stage 1-2. Surgery typically boosts chances of conceiving for 3-6 months, so make sure you time if for when you are actually ready to TTC.

I would however wait until after your wedding as recovery times can vary (I was off work for 8 weeks following my first op), and waiting a couple of months won’t have any impact (unless you are over 30)

Really hope that helps, give me a shout if you have any more questions ๐Ÿ™‚

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