Diagnosis in Feb

Hi, I'm new. I'm just looking for some support and a place to vent I suppose.

I'm 37, and my husband and I have been trying for a baby for over 2 years. I went to docs after 9 months and had some bloods, then some scans, then last November, I had a laparoscopy to determine the level of Endometriosis they suspected I had. They discovered some and treated it, but at the follow up appointment in Feb this year, I was told I also have Adenomyosis. Does anyone else have this? I was told that the only treatment is a hysterectomy, but because we're trying for a family, it's not yet an option. The consultant suggested that assisted conception was the way to go to get a family but I need to lose weight to hit the target for the treatment. I have so much trouble with this as my body changes at different times in the month. The pain has become increasingly harder to manage, so much lately that it has been stopping me going to work. Also, my cycles are all over the place so I never know when to expect it. Since the diagnosis I have been suffering a lot of anguish and have been so down about the whole thing. The thing that troubles me the most is that I went to the doctors in my early 20s about my period pain and also other abdominal pain and it was dismissed as stress and I was put on a contraceptive pill to mask the pain. I went again in my late 20s, had an ultrasound but again was dismissed. It is only now that I am ready to have a family that it has been taken seriously, all these years later.

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  • Endo is so shitty and what is more shitty is the drs missing it for years. Like you at 37 I found I had a huge endo mass that meant I lost my ovary and tube to it as it was too far gone. Nevermind having symptoms since I was 16!

    I went on slimming world that helped me lose 4.5stone and highly recommend it.

  • Thanks for your reply. I'm following the SW plan and have lost nearly 2 stone. I had a gain this week, which is the thing that has upset me.

  • Well done on the two stone. I found I plateaued quite a bit after the first two dropping off. Hormones play their horrid part and if you know you've been good and had a gain just means a big loss for next week x

  • Hello MrsT,

    So sorry you have been having a hard time! I can't offer much advice, but I have just found out I too have Adeno as well as Endo + my husband + I are just about to embark on our TTC journey!

    In the past I have done calorie-controlled diet using a website called MyFitnessPal alongside a FitBit + this did work well for me - no special, expensive foods or memberships to pay for + it certainly makes you very aware of what you eat! ☺ one of the worst things I struggle about with Adeno is the bloating!! I've lost a little weight + some days my belly just bloats out + looks like I'm in the early stages of pregnancy! πŸ˜”

    I am just finishing my 2nd Decapeptyl injection which has been amazing - but for TTC this unfortunately isn't an option, although it's something that could be there for the future or a bit of a break?

    Sorry not to be much help - hope you get some relief and support soon + good luck! xx

  • Thank you for your reply. I too suffer with bloating so can relate. x

  • Bloating with adeno & endo is awful, so uncomfortable and makes me feel very self conscious of my tummy sticking out. Mine always feels so hard and sore when I'm bloated xxx

  • I'm kinda glad to see others talking about this too. My husband just finally admitted last night that he hasn't wanted to say anything because he doesn't want to upset me further, but he does agree with me..... I do look mildly pregnant a lot of the time now because the bloating is SO severe. My stomach is rigid and hard to touch, not to mention that I've gained 30 pounds over the past two years while I've not known what's wrong with me. The fatigue and soreness has all but stopped any exercise I used to do. These days, I keep erring these extremely painful rubber band about to snap like feelings that happen when I just stand up from sitting down and often will twinge when walking so I have had to modify the way I walk (I'm a New Yorker originally so I'm used to walking at a brutally fast pace). Now I have to take tiny baby steps so I don't pull anything inside so jogging or even yoga is pretty much out of the question.

    How are you supposed to fight weight gain when you can't exercise, are exhausted all the damn time, and your body is screaming for carbs and comfort food? 😳 then you add in all the bloating and, bam, you look 5 months pregnant. πŸ˜”

  • Before my diagnosis I always put the bloating down to certain foods not agreeing with me, for whatever reason, and then would deprive myself of things. I'm pretty sure my body hates me x

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