I was doing so well after my GNRH shot. Apart from the sciatica and constipation last weekend, I was beginning to think I was going to be lucky with side effects.
I started to bleed (period not due until next weekend) and have severe pain last night (awake for the majority of Thursday night). The pain is right across my tummy, in my back and down my thighs. I also have dreadful cramping.
The mild daily headaches that I have experienced since the decapeptyl, has developed into a full on migraine. I don't know if all the above are due to the GNRH or just a coincidence. And. If these will continue (?)
I am seeing my consultant on Wednesday to discuss a hysterctomy (I also have adenomyosis, fibroid, adhesions and PCOS ) But I've researched a hysterectomy so much and now terrified of the possible complications! (I'm terrified of dying whilst under a general anaesthetic )
I am stuck between a rock and a hard place!
I'm usually really positive but my gynaecological problems are really making me look at life negatively. I have no support from my husband and my children become worried if I "complain"
Come on you, your doing really well. At least you can say your tried it.
Don't over read, I'm feeling loads better after mine, no complications, and it certainly can't be any worse than living with endo. The only thing that's annoying me I can't do as much as I like to, head says yes and body is defiantly saying nooooooo.
Chin up, boobs out and take some pain relief, really want to know how you get on on Wednesday, make sure you let me know. Mwah x
The decapeptyl is also going to impact on your mood Barb,
when you say "I'm usually really positive but my gynaecological problems are really making me look at life negatively. "
Actually the drug you are on is as much to blame for your mood right now and don't forget anxiety and depression and exhaustion from side effects all part and parcel of the drug experience and yes it will cloud your judgement ability and reasoning and coping skills. and despite you thinking with your rational head on, that you will have control over that - you don't while the hormone factories are shut down.
your mood will lift and your ability to cope and think rational thoughts rather than dwelling on scarey ones over and over, will happen after your stop the drug and your brain gets working again.
the depressive state you are in is drug induced, it creeps up on you doesn't it.
You didn't see that one coming i bet.
hope tomorrow brings relief from the worst of the side effects. it's pot luck which side effects cause the biggest headaches from one day to the next.
Oh Barbara-sorry this happening but don't despair as this is a sign that the decapeptyl is working-this is the flare stage talked about.Imaptient explained it really well in a previous post.The decapeptyl is trying to switch your hormones off and the pituitary(sorry if wrong) is desperately trying to compensate by pumping out more female hormones,but this cant last long and should settle down.Iwas told 4-6 weeks but was lucky that the flare only lasted 3 weeks. Stay hopeful and take as much pain relief as you need.
I so feel for you,as we are at same stage - at the end of the road treatment wise but terrified of more radical surgery.I think in your case it is the only answer but m sending up prayers that the decapeptyl works for you.It gave me 2 yrs pain free .
I had a week of severe migraines with my flare that led to nausea, felt like it would go on forever but after that in the six months of treatment i hardly had any.
Make sure you get antisickness
drugs from gp if needed, really helped me cope with migraines and take a menopause multivitamin to help balance your hormones out.
You should be proud how far you've come.its natural to have a down patch, hopefully soon that fog will be lifted and so will your pain xxx
Hi cuddlybarb, I'm sorry you're having a bad time of it with the GNRH drugs .. they are pretty full on from all accounts.. so I wanted to share a story with you to hopefully encourage you.. I'm a school teacher and there are three of us on staff struggling with endometriosis, however, one of the ladies decided to have a hysterectomy. Now back at school I asked her how she was doing and she said, 'It's given me my life back; I feel normal again. I forgot how it felt to feel like this.' I have got to admit I felt mildly jealous as I'm about to start the GnrH drugs.. grrhh. So I know you're struggling with the thought of whether a hysterectomy is now the only answer, but may be it IS the answer for you. The trouble with the internet is we get all the worst blogs and not always the success stories. Maybe you will be another success story. Thinking of you today and sending you a big hug x
Hi Cuddlybarb. Sorry you're having such a rough time. It does sound like you are in the flare stage- not pleasant but doesn't last long . It's also natural to worry about having a hysterectomy- I too thought I wouldn't wake up from the anaesthetic. I did however! It will deal with a lot of your pain when you get rid of your periods. It was such a relief for me and until I got this endometrioma I had no pain at all. Have you tried cutting out gluten for a while to help with your constipation? And maybe green juicing. I found when I wasn't so bloated and constipated my periods would be easier pain wise. How your digestive system is working seems to have a huge impact on this disease. The Decapeptyl is not great for your mood- I've had some very dark thoughts this week but if I tell myself it is the drug and won't last long I can get out of the dark place. This isn't the real us. I've made myself walk and walk and do loads of yoga. Don't let this disease get the better of you. You're definitely stronger than it and you have all our support on here . X
I really feel for you and send you BIG HUGS and POSITIVE ENERGY.
Maybe after speaking to your doctor about a hysterectomy you will feel less scared. It might take a couple of appointments to talk in depth about your concerns and have a better grasp of risks and benefits (oh dear, I'm sounding like middle management now). I suggest that you also grill your doctor on his experience of tackling a hysterectomy with the addition of your other issues. Ask him if you think someone more experienced would be more appropriate. My specialist wasn't upset when I asked him this and even offered to help find someone with skills better suited to my situation.
I also suggest you get a further opinion. The gynae or your good GP should be able to help with this.
Maybe by the time you have done all this the Decapeptyl will have settled down.
My complication is that the larger fibroid is in an inaccessible place and is embedded in the broad ligament near veins and arteries. This means that removal of the uterus and fibroid by laparotomy is necessary to reduce risks. This is quite a difficult position to be in and like you I feel like I'm between a rock and a hard place and I'm quite scared of such a major operation, complications and the recovery time. I don't mind having my uterus removed but it's not as straightforward as that unfortunately. Hopefully your situation is less complicated and easier to do by laparoscopy/vaginally.
Do let us know what happens on Wednesday. If you have a phone with a recording facility, either video or sound, then you could recap every so often in the appointment by dictating into your phone or even recording the whole appointment with your doctor's permission. I don't know about you but my memory and ability to note take is not as good as before. These appointments are stressful and with the decapeptyl to contend with it's not easy to be effective.
The other thing that might be useful is speaking directly with women who have experienced an endo related hysterectomy. There is an Endometriosis UK group near you! I went to one recently and found it really helpful even if only to be with people in a similar situation.
Hi Barbara,my names Alison.....I had a hysterectomy aged 35 due to endo and had d exact same symptoms as u,I was absolutely petrified dat i was goin 2 die.......try not 2 tink of d medical jargon der sayin 2 u and focus on gettin thru it.....dey told me coz d surgery was so complicated dat I wud b in hospital for at least 2wks and I was home on day 5,d relief wen i came round from surgery was amazing,of course i was in pain bt it wasnt d endo pain......U will get thru it and u will cum round after d surgery and i promise u wont die....its petrifying and no-one understands wot ur going thru(especially ur hubby,same as mine)bt if u ever wanna chat on here or ever wanna ask a question,no matter how trivial u tink it is,Jus ask and i promise i will support u as best i can....hope ur feelin a lil better 2day xx
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cyclizine didnt work too brilliantly for me, i found metoclopramide the best as also works on abdominal cramps xxx
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