Diagnosing Endometriosis, I Don't Know What To Do

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I believe I have endometriosis. My OBGYN believes I have endo. I fit every symptom that's listed, but it has not been confirmed by a diagnosis. I had an ultrasound that showed nothing, and an HSG that showed a bilateral blockage in my fallopian tubes, we had a hard time TTC and that's how we stumbled upon blocked tubes. 6 years ago I had a hard time getting pregnant, had an u/s and HSG and the following month I got pregnant. I believe the HSG pushed that blockage out and I was able to conceive. This second time around I wasn't so lucky. 

At this point in my life, I'm not trying to get pregnant again. I thank my lucky stars that I was even able to have my son. But the last two years have been some of the most horrible periods I have ever had. The pain and pressure are unbearable and I went to my OBGYN seeking a diagnosis. 

He recommended Lupron and suggested I look it up first. I did and was horrified by all I found online. I'm 35 and I'm so scared of putting my body through (albeit temporary) menopause. I have also battled with depression and anxiety and I am scared these drugs are going to ruin the balance I have finally created. 

My husband thinks I should steer clear of Lupron and go on birth control pills instead, treat it as if I have been diagnosed. I am concerned about the birth control pills also wreaking havoc on my mental state as well as nausea and other side effects I probably had in my early twenties but cant remember right now. His argument is that with the birth control pills, I can stop them at any time and rid my body of the hormones quicker than I would be able to with the lupron. 

My third option is to do nothing and just deal with the pain I have every month. While I am fortunate to not be working right now and am able to lie in excrucitating pain for 3-4 days during my period, I feel like I'm almost out of commission for two weeks, dealing with all the pre and postmenstrual pain and symptoms. 

I am completely lost on which path to choose. I feel like I lose no matter what I chose. I feel like whatever drug i settle on (if I chose one) I will become depressed and anxious again and lupron seems like torture.I am convinced I will have every negative side effect.  And if I do nothing, I feel imprisoned by my cycle and worry that one day, the endo will get bad enough to put me into emergency surgery. 

It has been three months since my OBGYN suggested I go on Lupron. I just went yesterday to a friends OBGYN who suggested the same exact thing. I dont know what to do! I'm scared and frustrated that this has to be this way. I feel like no one I know understands any of this. 

I really would love to hear anyones input on Lupron, or anything you can relate to in this post. Anyone's personal experience on having to make this same decision and what you think I could learn from it would really help me during this very dark phase I am going through. 

I really hope there is a light at the end of this tunnel for me and all of you.

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16 Replies

  • Posted

    Hello Brook,

    First of all, I'm sorry to hear you are going through this. My daughter is in the same boat you are, except she's 15 and already had a 5 hour surgery to cut stage 3 endo from her insides. My daughter started a period in June 2015, and has yet to stop. We can manage the bleeding by a depo shot and daily bcp, but she still gets breakthrough bleeding. We see a pain dr, who gave her a tens unit to help with her pain. Some days she can't even get out of bed. Maybe a tens unit could be helpful for you.

    My daughter is also severely depressed. She talks about ending the pain, and she is under the care of a psychiatrist, a hematologist, a pain specialist, a counselor, a pediatrician and two gynecologists. We have seen 4 different gyns and her pediatrician, and they have all told up Lupron is the answer. I'm petrified of this drug, and read horror stories on the Internet, esp because she's so depressed already. However, they all feel her depression is due to her pain, and the Lupron will stop the pain, so the depression will fade. We know this will push her into menopause, and she will have to use an add back of hormones, but as horrified as I am, I want her pain to go away more.

    She is currently scheduled to have her first shot of Lupron on Jan 23rd.

    Good luck to you, and I hope you can make a decision you're happy with. I just wanted to let you know you are not alone.

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    • Posted

      Wow. Thank you so much for sharing your daughters story. My heart aches for her. I couldn't imagine having to go through all of that at 15. She's got a great support system. You're doing a good job, mom.

      I've never heard of a tens unit until now. It is definitely something I am excited to research more and mention to my doctor.

      I was on depo in my teens too and it made me severely depressed. I'm sure the pain is exacerbating that. It is because of my experience with depo that I worry I will have negative side effects.

      I wish your daughter well in her next step. Would you mind keeping in touch with me and letting me know how she responds to the lupron? I will most likely opt for that route as well and hope for the best.

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    • Posted

      Hi Brook,

      My daughters pain management dr called me today. Just before the New Year, they did a nerve conduction study on her abdomen. Due to the constant pain from her endometriosis, her abdomen muscles and nerve endings are tense and always 'on fire' as she deals with the pain. He suggested doing a nerve block for her abdomen to see if it can possibly give her some relief - I spoke to him in great detail about not wanting the Lupron, and this was his suggestion along with the tens unit. We go tomorrow to learn about the procedure, so I'll tell you the exact name of it then - I'm sorry I've forgotten it. I'm praying this will work. So I have to call her gyno and postpone the shot for a week. We are seriously trying everything we can before Lupron. I'll write tomorrow, and keep in touch. This is our last ditch attempt before Lupron.

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    • Posted

      Hi Brook,

      I'm taking my daughter in for a Lumbar Sympathetic Block on Tuesday. This will bathe her nerves that come from her spine and radiate to her abdomen with medication that will hopefully help reduce her endometriosis pain. I'll let you know how it goes. We postponed her Lupron shot until February.

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    • Posted

      Hi Brook,

      My daughter had a Superior Hypogastric Plexus Block done this past Tuesday. It was administered at the surgery center and took just minutes to perform. We are still waiting for it to help her pain, although the dr did say it could take up to 10 days before we get the full effect, plus due to her having pain for years, it could take multiple injections. We are optimistic.

      However, that being said, my daughter had an unfortunate, yet sometimes expected side effect from the medication. Within about 15 hours of the injection, she began to feel flushed. Her face and neck turned bright pink and it looked as though she had a severe sunburn. My daughter said it felt like sunburn too, and was painful to the touch. She also said her nose and throat membranes were very dry and had to sip on water every half hour - even throughout the night. She's much better today (Friday) but she's still pink in the face and its tender. I'll keep you updated on her pain relief. Hope you're doing well honey.

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  • Posted

    I too have all the endometriosis symptoms and my gynae also thinks I have it. In due to have a laparoscopy this year to establish what is going on. Anyway in response to your concerns about hormones ; my own personal experience is again similar to yours. I suffer with low mood on occasion and every time I'm prescribed synthetic hormones of any sort my mental health suffers. Most recently I was put back on cerazette mini pill, whilst this helped with the pain (although not completely) my mood was erratic. I bled more than I didn't bleed and my skin looked dreadful. I stopped taking it on Christmas day as I'd been bleeding for 3 weeks straight. I stopped bleeding around new year's day and I've not yet bled since, however ovulation has been pure agony. I've never tried lupron but my gynae suggested prostap, I read up on it and decided it is not for me. Although the pain is horrific (I had stabbing pains in my rectum, vagina and abdomen on Monday night that left me unable to stand or sit comfortably) I am going to persevere until my lap. I have 4 children so if needs be they can take it all away, in the meantime I try to eat healthily. I go to the gym two or three times a week, walk for at least half hr to an hr a day and if I need painkillers I take them. Codeine works for me but as it's an opiate can cause constipation, which can be extremely painful. Hope some of this has helped x

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    • Posted

      Thank you for sharing your story. I hope your lap brings you relief. I too have the stabbing pains in my rectum and vagina. Sometimes in my abdomen. I can't sit without leaning on one side. I'm getting worse with each cycle. I have been experimenting with different ways to manage my pain but I think it's becoming too unbearable to ignore. I might try the lupron and talk to my therapist about going on an Anti depressant. I'd love to hear any follow up to your lap.

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    • Posted

      Hiya

      I'm replying to your post as you sound very similar to myself.

      My symptoms are pretty bad at the min.

      I too am awaiting a laparoscopy,hopefully mid March. In process of chasing this up.

      I'm in constant daily pain.

      I first got diagnosed with fibroids and thought it was them giving me all my symptoms. My qyny thinks otherwise. She now suspects endo.

      All my symptoms suggest that to.

      Periods are regular , light ish but extremely painful and getting worse each month.

      Never used to be this bad.

      Been suffering almost daily since June 2016.(even though I now can't relate to symptoms going back a few years )

      Digestive probs. Fatigue, weight gain and pain (left side) are my main ones. I constantly looking pregnant 😐

      I to got prescribed cerazette but to afraid to chance anymore symptoms as I was having a few good weeks at the time , apart from painfully periods.

      I'm now back to daily pain. Left ovary, hip ,groin,back siatic pain.

      I literally can't wait for my laparoscopy to get some answers. Any help would be greatly appreciated x

      Elaine

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  • Posted

    Hi Brook

    All your symptoms and choices are difficult. You are a medical marvel if you have all the symptoms! The rest of us just deal with some/many of them but few have exactly all the same symptoms. Those lists are just all the things we think are associated. Unfortunately too many of us aren't trained in scientific thought so I'm quite sure that somewhere you can find an online list that says a broken ankle is endo - not because it is but because someone said it is.

    I hope that you are under the care of a psychiatrist. Please consider talking to her/him about how reading all the online accounts has convinced you that you will have all the negative effects. This becomes a self-fulfilling prophecy. Reality is that you might or might not get those effects. Reality is also this: with this or any disease, people with a good outcome often don't talk more online after their pain/disease ends. They've had success! Why would they want to go back online and get back into the bad vibes of whatever condition they experienced?

    Which is not to say anything about Lupron specifically. I have no experience with that drug. But the next time any doc or nurse tells you to look something up online, ask them what sites you should visit as you've had bad experiences looking things up on your own.

    With all due respect to the teen & her mom, a teen's depression isn't a yardstick for you to use. Healthy teens are subject to vast mood swings daily, part and parcel of hormonal swings and a brain which won't be mature til age 25. This mom's daughter already lives a nightmare at 15 and can't enjoy all the fun parts of being a teen. Had my endo been that bad at that age, I'd have killed myself. Because it didn't get that bad until later (I was on stronger bc pills than they sell now from age 16 - 23), the thought of suicide never occurred to me.

    There is no perfect choice here, just the certainty that endo gets worse as time passes.

    You are in my prayers both for your endo & for getting through these horrid choices.

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    • Posted

      Thanks for your input. I'm with you on all the points you've mentioned. I fit the vague criteria mentioned when looking up endo. My previous experience with altering my hormones leads me to believe I may be sensitive to lupron. My therapist and I have agreed to monitor my moods bc the likelihood of that being affected is great. I will definitely ask my doctor what he recommends as far as online information supporting the drug. Much of what I've read is from the manufactures website and a lawsuit that occurred years ago and a few forums of symptoms women experienced. I've Just been trying to get an idea of how common some of the symptoms are, if that makes sense. Obviously, everyone's body and reaction will be different, but are there certain symptoms that most everyone experiences? I think I'm like you, in that I was on bc for so long from 16 to about 23 or 24 and it may have helped me without my knowledge. I can only imagine what condition my body would be in right now had I not had that borrowed time.

      I know I will make it through whichever I chose, just hoping to hear more thoughts from women like you who also suffer. Thanks so much for sharing.

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  • Posted

    I am so sorry you are going through this. Endometriosis is a long term disease without much understanding or support and with many complications and pain. I can't speak to the Lupron. I can speak to the depression, anxiety and fear. I felt like I was going crazy and I was labeled crazy. The hormonal ups and downs were crazy. After suffering with endometriosis for 20 years I had a hysterectomy 10 years ago and 6 months ago I finally got on hormone replacement therapy that works. I no longer suffer from mood swings, anxiety, depression, crying at the drop of a hat, insomnia, feeling ill every two weeks, night sweats that soak the bed, hot flashes, migraines, exhaustion, irritable bowel syndrome, torturous pain and a laundry list of other problems that I've been dealing with since my 20s. My best advice to you is get educated and educate your support system this is a long hard haul. I do not suffer anymore:I'm 50. I am on this forum because I am still trying to understand what happened to me for most of my life and to make sure the women who still suffer have support. Although a hysterectomy and hormone replacement therapy do not work for everyone they did for me. I don't have any fail safe answers for you. I sincerely wished I did. Have faith in yourself to make the decisions you need to make. Know that you are not alone. Believe that one day all of this will pass and you will be free. 

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    • Posted

      Thank you so much for your words of encouragement. I do feel lost and it's hard explaining it to people. I fell like it's just getting worse and worse with each passing month. I appreciate hearing others and what they've had to deal with. im hoping to be able to live somewhat normally again soon.

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