Newbie and needing a chat <3

Hi there, hope this is finding you all as well as possible <3

I have had serious issues with my periods since I started having them at the age of 10. Incredibly heavy bleeding (vaginal and from the back passage. Something I always put down to my Von Willerbrands a blood clotting disorder) where I would have to have a shower in the middle of the night as I was a mess, incredibly painful not just during my period but throughout, clots, horrid lower backpain amongst all the other joyous symptoms! I was finally diagnosed with endo at the age of 19, I am now 29. After many years of Prostap injections, numerous operartions (last one taking 4 hours as many organs etc were being pulled together) I have been incredibly blessed to have just had a beautiful daughter. As my surgeon said, an utter miracle. Now, for years every doc I have seen have told me because of the severity of my endo, I will have to have a hystorectomy one day. Even after being pregnant (which can help), being back on the prostap injections, my endo is here back with an absolute vengence. Already been given Oramorph on prescription for pain (unreal) and bleeding so heavy even on injections... The day has come where I have to make a decision. Do I go on with this horrendous disease praying one day i'll have another baby one day, admit that even the thought of trying (especially so soon as our baby is 16 weeks old) is just too soon or do I have a hystorectomy and get rid of the horrid thing as coming upto 20 years is long enough now? All advice and opinions welcome as I am in complete turmoil.

So sorry it's a long one, this is the shortened version!

Many thanks, Mrs T <3

10 Replies

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  • Hello Mrs t, sorry to hear your going thro an awful time. As for having a hysterectomy,well that's a huge discision. As I understand it a hysterectomy only really helps if you have adenmyosis. If I were you I would try and have another baby before making such a final discision. Also endo can come back even after a hysterectomy. There's no easy answer. Best wishes xx

  • Thank you for replying. I also have adenmyosis they believe, so it would be amazing if it helped something. As you say, it's such a huge decision, one me and my husband (who is amazing) are not taking lightly. The thought of there being the slightest chance that one day we could have another child makes me think that I have to be strong and hold on, no matter how much pain i'm in. Thanks again xXx

  • Hi there, 2 weeks ago today I had a total hysterectomy, bowel surgery and I sticking bladder. Suffered 26 years with this horrid disease along with many, many surgeries, injections and medication. I am blessed also with miracle 2 tr old twins (ivf) due to endo. I couldn't stand the pain any longer nor did I want to continue to life I was leading, so that's what I had done. No regrets. Yes, their is a chance I could get pain from all thd scarring on bowel and bladder (both extensive), and thd hot flushes have started but I'll take that any day over the pain I have lived with. I feel totally blessed being a mummy, something I thought I would never be so sure I can't gave any more children, but that's ok. I can't wait till menopause is over and I start living again. Am now 40.

    That's my story. It is entirely your decision and never be swayed. Think what's right for you. Perhaps talk it over with a professional if you a truly torn then hopefully they will help you get some clarity.

    Good luck x

  • So sorry to hear you suffered for so long <3 it can be so cruel can't it. My endo has attatched to the bowel where is was suffocating parts of it so I kept throwing up, my bladder, left ovary was suffocated, right fallopean tube twisted with a cyst on, 4cm cyst top of vagina, vagina wall stuck to rectum wall, bladder, amogst other parts. All of this happened when I came off my prostap injections for just 4 monthsto try and start a family. I hate how i I have to make this decision now. Thanks so much for your response, I think I will go to my gynae surgeon xXx

  • Sounds a good thing to do. Hopefully he/she will give you the facts without influencing you either west as it has to be your desicion.

    I had a similar discussion with mine about 10 years ago and was told I need a hysterectomy but as I wanted children, then to try and 'pop' them out ASAP as priority. I continued to live in pain for a further 8 yrs and have surgeries including my first bowel op, a divorce, until I found the right man.

    You have so many things to think about unfortunately. It's not just a case of do I try or have a hysterectomy but also if you are successful with another baby, will you manage with a small age gap, the emotional pressures of trying, how soon after baby #2 do you get a hysterectomy, will you have help etc. mind are 2 yrs 4 months and have has help for last 2 weeks but now were on our own. I'm still healing, esp as had added surgery so it's going to be a tough few weeks.

    Sorry if this confuses you more. Reality is, us endo sufferers always have to look at the wider, long term outlook from all angles.

    I truly wish you luck and hope you and your partner reach a decision. Your both happy and content with. I was in turmoil until I made mine, then felt a huge sense of relief xxxxx

  • That's a very tough decision. When I had to make the decision to have a Hysterectomy, because of Endometriosis. I cried my eyes out. It meant I wasn't going to be able to be a mother at a young age. And as my physchian said, miscarriages are worse. When you're dealing with Endometriosis. And yes. They are very much.

  • It's horrible to be in this situation isn't it, one I wouldn't wish on anyone. So sorry you yourself have been through it. If you don't mind me asking, what age were you and did you go through with it?

  • Exaxtly, that's another thing, could I cope with another child so close together. I also have a condition called Fibromyalgia so would it be physically possible to look after 2 babies so close together. I'm so glad you have had that sense of relief with your decision and I hope you are not in too much pain. It's always been the same with me, Doctors telling me to 'pop' out as many kids as possible and as one doctor put it 'get the b*****d out'. Endo certainly does put so much turmoil into your life doesn't it! Thanks again xXx

  • I'm sorry. That you're having these problems. I hope you feel better soon. Don't forget to take extra caution with yourself. And know lots of others are dealing with problems, too. It's ok. To get upset, cry, or handle it... However you deal with things. Try to stay healthy as you can. Even though that's challenging. Because I know you're very sick, too. Keep your chin up.

  • This is why I joined this forum, as I knew I could talk to people who really understood. Thanks so much for replying.

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