Endometriosis UK

Am I being to weak?

Morning,

Hope everyone is doing as well as can be. I'm struggling and don't know what to do with myself. I had 6 month on Zoladex with 2 heavy but relatively painless bleeds whilst on it. Since coming off I had one normalish bleed and then nothing for 6 weeks.

I have been off work since Wednesday, I had lower pelvic pain, extreme anxiety and chest pains and felt generally unwell, Thursday I was in so much pain i couldn't move other than to vomit this carried through the rest of the week heavy bleeding and large clots began on Friday, i went in to work as id been off two days and felt bad, they immediately sent me home. When i did make it out the house for an hour with my husband Saturday I didn't move for the rest of the day i was exhausted. All I seem to be able to do is cry,vomit, bleed tell everyone in sorry for letting them down or being a burden and wish thst I didn't feel this way or that I could be wonder woman and mask it all.

I was going to get back into work today and grin and bear it had my clothes laid out the lot. I didn't sleep from the sweating and pain and laid here this morning and thought I can't I just cant. The doctor signed me off last week but I hadn't collected the note and was going to just get back in work ASAP my husband and dad are telling me to take this time and make sure I feel better before I do anything as they thi k I'm pushing my self to much. Which is great on the one hand cause I spent 7 years up to my diagnosis being told I was a hypochondriac and a drama queen but also I rarely feel better if im lucky I might get a week a month before the pain around ovulation and then the pain leading up to and after a period.

I just dont know what to do with myself what to say to work just at a bit of a loss.

4 Replies
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Hi Ashleigh - I also done 6 months on Zoladex which was amazing besides the menopause symptoms I suffered as I had hardly any endo pain during those 6 months - I came off them in September and had a 2 month break before going back to see my specialist and during those 2 months I had awful pain and anxiety etc all over again! After speaking to my specialist he decided that zoladex is quite a nasty medicine and only used as a last resort usually.. as I already have the Jaydess coil in he suggested starting the mini pill alongside it as it works the same as the zoladex with much less health risks. I would definitely recommend trying the mini pill/coil to help with your symptoms as (touch wood) I have had very little pain since I started. Hope you feel better soon xx

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I don't know how old you are or whether you've had surgery but it does sound like you have very severe endometriosis. I pick up that you mentioned having chest pain as that's one of my many horrendous symptoms and is so debilitating.

Currently, I've been on Zoladex over 5 years and have recently gone on to 3 weekly injections instead of 4 weekly as they were wearing off too soon.

You have a very serious illness which often isn't recognised - just listen to your body and rest. Forcing yourself often results in worse symptoms in my (very lengthy) experience.

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Thank you both for your kind responses. I flit between being ok and then over whelming doubt, guilt and sadness. I feel so pathetic and defeated. I'm 27 and had stage 4 endo removed may last year whilst on the zoladex. I paid to have this done privately to cut waiting times and then unfortunately did not receive the after care promised. The last appt I attended I water half an hour then saw my consultant leaving though this was strange but perhaps he was getting a file or something. I went to ask the receptionist and he had left for the day they had checked me in but I wasn't on his patient list. I'm now waiting for a nhs appt as I cannot afford further private care so I'm under the care of gp's at the moment a different one each time I attend last week I was tested for a blood clot because i reported the chest pains despite constantly saying I think its endo related.

I find it hard to explain to work cause there is so much that seems to be going on with my body and I think they find it difficult to understand how it affects so much. I'm signed off this Thursday and still umming and ahhing about whether to go in tomorrow. It's so hard to accept I think I spent so long (7 + years for a diagnosis)being told i wasnt ill that i still have alot of self doing and think everyone around me is doubting me.

Again thank you for you for kind words feel like I'm being swallowed up by it all at the moment. xx

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Hi Ashleigh13, When I was 22 (I'm 43 now) I had my right ovary & tube removed due to cysts & my left ovary had a procedure on it that shouldn't have allowed any more cysts to grow on it...this was successful for a good 15 years and had no problems no pain, but then the pain came back and I was told I had cysts on my left ovary & diagnosed with Endometriosis. In Dec 2012 I had an op to (what I thought) remove all the cysts but was told after that they had just taken away the fluid from the cysts, had no pain for a few months, but then in March 2013 I knew the cysts had come back (you just know your body don't you) & I had the same procedure which halted the pain again until Sept 2014 when I was rushed into hospital due to the debilitating pain from the Cysts & Endo. It was only then that I saw a new consultant and he told me that he would put me on the above injections and see how I go...I am eternally thankful to him as within a few days I had no pain at all & got my quality of life back. I was on Zoladex for 2 years & had a break of 14 months, I've had 2 heavy periods in the past few weeks & horrendous pain again, so much so I went back to my GP & asked him if I could go back on the injections, he read everything on my notes & gave me another 3 month injection & within a few days I'm back to my old self PAIN FREE, yes I also have to take Premarin to combat the menopausal symptoms, but I'd rather take them than have the terrible pain. I am now also 8 stone lighter and an op to remove everything is highly probable (as I was too heavy before) which I will be so happy about. You should definitely ask if you could go on the injections, they really are fantastic.

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