Next Stage

[ChessJ]

Hello beautiful people

I need some help I’ve had my laparoscopy back in November was hopeful it would work. Unfortunately at my follow up appointment I was told they couldn’t remove any from the right hand side as it’s all on my fallopian tube and if they did it could lead to scaring. Which then would lead to other complications such as ectopic pregnancies and so forth. I was told they could try remove it and remove the tube which I’m scared about but thinking is this my only hope now as I’m very anti the coil.

I was prescribed Dienogest - Dimetrum which they said would help and stop the flares up. It definitely hasn’t helped at all I am still having flare ups, fatigue (resulting having to go back to bed after work or half way through the day), constant leg pain, brain fog, headaches, lack of concentration and break bleeds. I feel so soul destroyed as can’t certain things anymore as certain yoga classes are now too intense for me or if I do too much in a day I’m exhausted and if I walk too far I feel so uncomfortable. So some days I’m like I want a crutch to help me. I have to work from pretty much full time now as one day in the office drains. Which has been one for a better description absolutely shit.

I have an appointment with my consultant in a couple of weeks time to discuss the next stage and I’m not sure if I should go ahead with operation but I know I can’t go on with this pain anymore.

Any advice will much appreciated x

[G_Worth]

I’m so sorry to hear what you’re going through, and I really feel for you. I’m not sure which hospital you’re with, but I also had a laparoscopy in November. Before the procedure, they discussed the potential risks and complications if endometriosis was found on or in my fallopian tubes or ovaries. I recall ectopic pregnancy being one of the risks, and they also mentioned the success rates of IVF after a salpingectomy. It might be worth checking with your consultant for specific details, as my memory of the discussion is a bit hazy.

I tried to approach the situation pragmatically, weighing the risks, my quality of life, my desire for a family, and the potential impact of having children while managing the symptoms I was experiencing. For me, I consented to removal if necessary, as I don’t currently have a strong desire to have children—though I’ve acknowledged that my feelings might change in the future. What helped me was reflecting on my sister’s journey with endometriosis and fertility. I’ve tried to remain open-minded, if I do choose to pursue having children in the future and it works out, it would be a blessing, but I’m also aware that there are no guarantees. If it’s not an option for me, I’m sure I will still have a full and happy life.

I experienced similar symptoms to you. Fatigue. Brain fog etc. I’ve suffered on and off with brain fog and fatigue.

For me the Mirena coil has significantly improved my endometriosis symptoms. I have had Mirena coil for 6 or 7 years now and barely have much of a period.

I took dienogest for roughly 1.5 years. I was prescribed initially as pre operative medication. The consultant wanted me to take for 6 months (minimum) prior to surgery to suppress the endo and make operating safer. When I first started taking dienogest I felt like it improved my symptoms but towards the end I suffered what I can only describe as debilitating fatigue and brain fog. I always considered this to be a symptom of the endo.

I visited my GP in October she suggested the fatigue/ brain fog may be due to the levels of progesterone hormone in the dienogest combined with the Mirena.

I stopped taking dienogest in December after my surgery (November lap) It feels like the brain fog has lifted and I’m not as tired. Though, I haven’t yet resumed all of my normal activities and exercise.

On a side note: trust in and advocate for yourself. I had tried to speak to a couple of GP’s about the fatigue and brain fog and they kept trying to fob me off saying I was depressed. I knew I wasn’t depressed. On one occasion I ended up sobbing in frustration because I felt like I wasn’t being listened to.

I am so sorry you are going through this. Wishing you the best. Please do keep us updated on your progress.

[ChessJ in reply to G_Worth]

Thank you it feels like an ongoing battle and I keep telling myself endo you’re not welcome today in various forms. I had mine done at Frimley and my consultant has been great. How about you? Yes I was told the same at my follow up appointment due it being on my right tube and she couldn’t remove it. Which would explain why I’m in so much pain. Think since my lap it’s got worse.

Interesting to know what you said about IVF as I was thinking about maybe artificial insemination so might ask the consultant too about that, as I’m still toying with having a child.

If you don’t mind me asking did you have your tube removed during your procedure? I am very much like if I have it removed there will be ways around it when I come to have a family as I did a blood test for the egg count and everything came back good.

I’m still very anti the coil as I don’t think I want to go on it as I’ve heard not great things about it.

I’ve just started my second month of dienogest and don’t feel it’s helping at all, and I hate the constant tiredness. It’s exactly now I feel being fobbed off the whole time as my I was told oh your tiredness is due to the time of year and I need to dig deep and get on with it.

Roll on the 14th February for some new solutions and thank you for replying to me.