Forced to live with the misery of Endometriosis

By malinimenon

3 min read

I was diagnosed with endo when I was 15 years old and since then I have been suffering. It's not just with the physical pain, it takes an emotional toll on your life. My parents were scared by doctors mentioning that I could not bear a child and if I get lucky to have a child this condition would go away. I was engrossed in anger to see a doctor who is supposed to be wise, can give such advice if he's not sure.

The first piece of advice my doctor gave me

To Marry me off quickly and try for a child as quickly as possible.
My parents being really sensible and supportive allowed me to study as much as I wanted and through all the pain and surgeries in between, I managed to get my master's and a really fancy job as well. The irony is that while everyone around me was enjoying the fact I got selected to a reputed firm, my main focus was how to handle and live through this agony every month. By this time the pain was not restricted to the cycle. I started getting pains and cramps weeks before my cycle started and continued after my cycle as well.

The second piece of advice my doctor gave me

I have reached stage 3 of endo now, you will not have a baby, but at least you can try.
I married the love of my life, he is understanding and we started our life together. Then as expected I couldn't conceive and my condition was getting worse month by month. I used to drag myself out of bed to the office in pain. I loaded my body with painkillers to just sit up straight. I had to remove my tubes as this was blocked and long story short - we conceived my child through IVF.

The third piece of advice my doctor gave me

You are lucky you got a child, endo will go away if you try for the second one soon.
I am furious now, it's as if doctors who decide how many babies we need, it's just me who knows the struggle I had to deliver one. And my endo wanted to stick with me and it became even worse after delivery.
We decided that we need to care for our baby and end my misery so we needed to end this trauma and decided to tell the doctors that we are ready to get my ovaries removed. But to our surprise, the doctors we went to advised us to try for a second child, but since the situation was getting out of hand and I started to collapse in pain. They convinced me and my husband that inserting Mirena (IUD) will fix my problems and I can drag on till 40 before removing the uterus and ovaries.

These should be and are my decisions

All these feedbacks are from around 13 different doctors and what makes me feel sad is how is anybody else taking the control on the decision of my happiness and life without pain and misery.
I am an individual who has the right to live my life painlessly and now that I have a child to take care of at least I need to be healthy, sane, and pain-free to do that.

What I wish for my future

I hope someday soon will come to relieve me of this endless pain I have been suffering all these years. Not to mention many times in between these struggle I had the thought of suicide but I am lucky and grateful that my family is my strong pillar and is very supportive. Its my mom who I owe my life and whatever I am right now since she is the one who took care of me while I was rolling in pain, she is the one who takes care of my child while I can hardly stand up while in pain.

What advice I would like to give the doctors in return

To start with if you are not sure please do NOT misguide, please don't give stupid suggestions, not everybody will be lucky to have parents like me. Your senseless comments like 'conceive a child quickly' could ruin a girl's future.
Secondly, respect a couples choice -it's not always the count of children you have it's the way you bring up the ones you have matters. So relieve endo patients of the misery so that they spend quality time with their child.

Thank you
Malini

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Kimberli Davino Member
<inline-mention username="malinimenon" user-id="2056337"/> wow- such a young age for a diagnosis. I am sure that was really tough to have to hear and deal with dear warrior. You are so right though, it isn't just physical, it takes an emotional and mental toll too on our lives. I dislike that advice so much about getting pregnant. So many doctors have tried using this one on me too. So proud of you for even with everything you were going through, you got your masters! I know that was probably not an easy ride. I know the doctors have not been helpful with their advice and helping you find some relief but hallelujah on your blessing and little bundle of joy! You do deserve to live a life without pain and it angers me that most doctors don't understand this. Or even know how to go about treating us properly. It truly does help having a good support system and family backing you up. I know I have had those dark moments so many times and it was my husband and family who have helped me through. I absolutely love the advice you would give to doctors. It is on point. And I could not agree more with it. Just wow, thank you for sharing your story and for your words. You have been through so much and here you are, continuing the fight. I hope you do find that relief you are looking for and SO well deserve. Just know, you are not alone. You have this entire community here. So reach out anytime you need us. Hugs <3 -Kimberli (team member)
Amber Blackburn, RN Member
I relate to this so much. For me I was 32 and asking for a hysterectomy rather then my fourth laparoscopic procedure. I knew I wouldn’t be having kids even if I was able. But she refused saying “you’re still so young, you might change your mind!” While I get that might be the case for many women it’s not for me. Aside from having Endo, I also have lupus and take big dangerous drugs to treat it. And migraines that I take multiple medications along with Botox for. So all of my drs have told how bad of a choice it would be for me to have a child. Not only would it be a very high risk for me but it could be very dangerous for me and baby. At 37, do I still cry sometimes bc I’ll never know what it is like to have my own baby? YES! But I know there are other options. But it still makes me sad. I now have an IUD and it has kept my Endo symptoms at bay for awhile. So I just try not to think about all of this. Thank you so much for being so brave and sharing your story with us!! Amber (endometriosis.net team moderator)
Kimberli Davino Member
<inline-mention username="malinimenon" user-id="2056337"/> - was scrolling through stories and wanted to stop on yours. Thought I would reach out and see how everything has been going and how you have been! I truly hope well <3 Sending such big hugs your way! -Kimberli (team member)