Please read...Newbie here feeling lonely - Endometriosis UK

Endometriosis UK
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Please read...Newbie here feeling lonely


Hello Im Emma 27.

After 6 years of suffering ive now been medically diagnosed with Endo. Im currently sat at home recovering from a laposcopy, hystoscopy and loads of other prodding and poking down there. My surgeon told me that i have a very high chance of infertility which has upset me as we were planning on trying for baby number 2 at the end of this year. (Currently have a gorgeous happy healthy 4 year old daughter).

Discussed hormone treatment after surgery to help keep endo at bay. And my one and only option was the progestrone only pill. So im taking micronor.

I just feel a bit lost. Gyny have said they dont need to see me back unless my pain starts getting unbearable again. Im just confussed... after i recover from the op am i just expected to carry on as normal?

No checkups? No help in managing this?


6 Replies

Hi Emma, it can be very confusing at first and the only way I was able to find out more information was by looking at the internet. Even when I saw my GP after my first lap he simply printed out a few pages of info off the net and thats because they don't have the knowlege. I think if your gyny are happy and don't want to see you again unless you're in pain, then I'm assuming they must have treated the endo that was present and you should be ok once you have recovered. Did they measure this when you saw them? In terms if monitoring the condition the best person to do that is yourself. Try to keep a pain diary. Write in it the day of your cycle and how you feel. Don't forget other symptoms other than pain such as sickness, headaches and tiredness, mobility issues etc... if you then start to have problems the doctor's can then clearly see the problems, can monitor you on your pill and the effect its having on you. Also try to find support by attending a local endo group ( try endometriosis uk site) as I found this was a great help in understanding the disease and practical ways on how people are living with it. Take your husband with you so that he doesn't feel helpless and can understand what support you need in the future. In terms of fertility i can't give advice as i am also in your sutuation and have just started trying for my first baby. But the group would help as there is normally a doctor or nurse support on the night. Call the group leader to confirm this. Good luck and remember all us ladies are here for you.

Emz87 in reply to kitty270

Hi Kitty270

Thank you for your kind reply.

I was looking into support groups and was researching on the Endometriosis UK website which linked me to this forum.

Unfortunatley there are no support groups in my area. Which is why i turned here for help. My doctors were just sat reading info off the computer nhs screen just like i could do at home. So they were no help neither.

Yes when i had the lap they burnt and removed areas. They took two biopsies too (which im currently chasing the results for)

Due to me been unable to take the hormone estrogen due to suffering severe migranes which can onset a stroke. They can only provide me with a progestrone only pill. The surgeon who perfomed my op says that the progestone alone is not strong enough to keep my Endo ar bay. And he expects in the next couple of months that larger areas will start growing back again. But until we figure out whats happening baby wise... is suppose there isnt much they can do. I just feel a bit lost and sort of thrown out on my own to deal with it.

Im still in alot of pain from my lap. How did you feel after yours? I still cant sleep on a night from the pain and uncomfortable-ness of it and my belly is still really swollen.

I like your idea of a pain diary, i shall start doing that.

Thank you again for taking your time in replying to me.

kitty270 in reply to Emz87

Hi, on my first lap I had laser treatment for widespread endo. It was basically everywhere and I was in surgery for 3 hours. It took a good 3 weeks to recover. Sleeping was difficult as i couldn't find a comfortable position. Because of the gas they use to balloon the abdomen your also very bloated which causes pain from pressure. I also had a hysteroscopy and developed a nodule of fluid near my vagina the size if a golf ball. Which felt scary but it dispearsed naturally over the three weeks.I also found lying flat was difficult so i used to lye on my back and use a pillow under my legs and extra pillows for my head to create a comfortable angle. All people are different. some people recover quickly others take longer. Give yourself time, it will get better. Don't forget your first period maybe quite painful due to all your organs being raw. I know mine was awful and needed an extra week to get through that. It can take upto 3 months for everything to heal fully so be patient. Take care, take it easy and you'll be fine. Best wishes Cath.

Oh I forgot to say I was also taking the progesterone pill. Personally I requested this due to there being alot of breast cancer in my family. I also thought that estrogen is the problem and your better off taking progesterone as this shrink the endo deposits on your organs, it also reduces your periods to help with the pain. I also suffered with migraines but there are lots of different brands out there. Noriday increased my migraines where as Norgeston has really help so I have very few these days. Keep the diary and add in the migrainous day and this will backup requests to change your pill in the future. Best of luck. If you need anymore advice or want to chat just send me a message. I don't have all the answers but can be a support for you. I'm a valeys girl from south wales.

Thank you... i really appriciate it!

I was only in surgery for an hour and 15mins. So no where near as long as yours. Yes the gas in the abdomen i struggled with as for the first 5 days the pain from the carbon dioxide releasing was horrible. Shot straight up my right hand side of my body. My back, neck and shoulders were hurting for days. And yes im havin the same sleepin arrangement. I have pillows and cushions everywhere. Wedged under my back and under my knees to get my body in a better position. Glad to know its not just me whos had to go cushion support mad. And im still uncomfortable. Had my lap and hystoscopy on 15th july. Thought id be back at work by end of next week. But dont think thats goin to happen due to pain. And dont feel like driving yet either. Thanks for the heads up on the first period. Ill brace myself for that one. And thanks for the chat. Has really helped me!

By the way ... my other half will be pleased. Hes born and bred Cardiff. You'll be fueling his 'welsh are the best' slogan when i tell him where your from. Haha. Thank you!

Maybe try the depo shot. I hope things get better for you and you have baby number two.

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