Gonapeptyl injections, fibroid, madness

Good afternoon,

I am really worried. I've seen various gynaecologist, but I am really not happy. The short story is: in October 2016 a scan shows that I got various fibroids. I was having heavy periods compare to my normal ones and I was anaemic. The gp prescribed tremaxemic acid and metanfemic acid. I think actually that medications make my periods longer and worse. With blood clots etc etc. In December 2016 I fainted, in A&E they give me iron and I had an anaphylactic shock. The gp keep insisting that I don't need to be referred to a Gynaecologist and that I should have the Mirena coil. I did a bit of reserach as I have never took bc pill or any other tipe of hormones as contraceptive. Anyway they could't fit the coil.. Luckily I think now. So then, tired and angry, finally I got the referral for the Gynaecologist. He suggested to have an hysteroscopy and a biopsy (no cancer) and to fit the coil if possible. The hysteroscopy shows a 4cm fibroid inside the cavity of my uterus and the doctor said we need to do a TCRF and before that you need to have 2 Gonapeptyl injections. This was on July 12th. Since that my life has being a living hell. I had my period for 34 days, heavy and terrible. 34 days!!!!!!!!!! I was so scared. I thought I was having a prolapse. My body was falling in pieces. I've been heavily suicidal. Etc. After that the blood stops, and the other symptoms came around, hot flushes, memory loss, pain in my joints, etc. Now I am bleeding again, from 6 days, really light random blood. I have had my blood test last Monday 11th and it comes out that there no LH and serum estradiol in my blood. Progesterone was 1 and prolactine in the range. Now I am wondering, is this blood my period? Is this normal? I believe that my cervix was damages during the hysteroscopy and have moved after the procedure. But anybody, both gp and gynaecologist said that everything is normal. But it's not.

Do you had any similar experiences? Please help, I'm going insane.

16 Replies

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  • Hi Ally-1, I am so sorry to hear what you have gone through. I have just joined the forum today as I have had a history of gp, gynae for Endometriosis and I am currently on a similar drug treatment of Zoladex implants. All of which has similar side effects to which you have too memory loss, hot flushes, low mood, depression etc,. I have seen that it can take up until your second injection to stop bleeds etc depending on when it was given and your normal cycle.

    It is stressful, I know as I have been at my wits end but reading on here I see a lot of similarities between peoples posts and therefore know I am not going mad, it is the implant side effects and it is a lot better than my Endometriosis. All I can say is get back to gynaecology. Ask for second opinion if you are still not happy. A lot of drugs and treatment seems hit and miss because each one of us are not 100% the same as each other, as I react to something you may react differently. Wishing you all the best and hope that you get sorted soon.

  • Thank you @LH38, yes at least knowing that someone else is experiencing this make me feel less insane (even if I will never wish this to my worst enemy). But it still that unfortunately what I've learn from this experience is that there far too much superficiality and lack of understanding when it comes to women's health. I feel completely let down. I think, all of us, women, with any kind of gyno-troubles should stick together and find better ways, better options, not this blind attempts that seems to be common practice when it comes to gynaecology.

    I hope we will be alright, somehow, sometime soon!

  • Hi ally, I too had the bleeding initially then it stopped, however the memory loss came along later on... If you find it hard to continue the injections then consider stopping them , I regret having them as I am still waiting for side effects to reduce!!

  • rajsam thank you for your reply. I had just one injection on 12/07 as the side effects are unbearable for me. I'm wondering after how long I will be back to normal. Am I going to be back to normal? Like my brain? My body? My hair? Are your side effects improving? When did you have your last injection?

  • Hi, well I had 8 injections, but my side effects gradually kicked in over those 8 and my body started rejecting it at the 7th injection.. I feel exactly like you that I just want my body back to normal again.

    You will get back to normal as the chemicals will eventually disperse out of you... when that happens is anyones guess... however as you only had the one injection i think you wil see a recovery soon..

    I have spoken to a doctor who works abroad and he reassures me that the side effects will eventually go away, and I have spoken to numerous pharmacists who are actually more clued up with medication and tell me that side effects will get better but just need time...

    Next time you pop past a chemist ask the pharmacist about the medication, I found them to be much more reaasuring than the gynochologist who juat shrug their shoulders and state that I had mental health issues..which I know I didnt... .

  • Thank you so much! I'll asked the pharmacist. It's awful how they treat you like you are insane. They suggested me all tipe of mental issues. Trying to give me antidepressants, antipsychotic. Sleeping tablets. They are pushing me the other way around. I don't take anything anymore. I realised for example that all the ibuprofen I used to take make me bleed more. I am sure that everybody is different and that the only way to heal is knowing our bodies. But it's so hard, like a full time job. It's so hard to choose what to eat and what not. And I'm trying to keep up. Acupuncture have help me as meditation does. And exercising but it's just hard. I admire so much all the women in here, the mothers, everyone. As I'll probably end completely lost if I had kids to take care of. I'm struggling to keep my work and my mind together. It's been a really good idea to subscribe here. Thanks xx

  • Keep with us... I gave in and accepted the anti amxiety tablets amd depression tablets... I couldnt cope with it!!

  • I have been experiencing gynaecology and GP misunderstandings of Endometriosis for all my adult life. I find that I never see the same consultant more than a few times and GP's never connect all side effects/aliments or other health problems together. I find online conflicting experiences, as we are all different.

    I have had 4 implants so far after my operation in May and I have been very low and depressed by it. I have to make a decision to have a hysterectomy for my next appointment its tough.

    I agree if more knowledge was around this would be easier, I believe it is getting better than previous years. I find my friends all look at me like an odd person. They have coils fitted without hitches or side effects, they take mini pills no side effects or hitches yet I tried them all after a consultant told me it takes months to see if it settles. I have had to had operations to fix my twisted tubes and cists as the different medications have not worked. I thought I had cracked it with the Evra patches loved these but my GP wont prescribe them as I get migraines. So I thought I would go without, like my mum, have nothing and sadly I ended up in hospital requiring another operation. I know I am not different, Just different from the people I know! I am pleased I found this forum, many a like and hopefully answers to our questions.

  • LH38 I'm so sorry for all the things you 've been going through. I empathize and I understand so much, my best friend has been on bc from always and she is just fine. Other friends had babies all good. Others have fibroids and no problems. And then, me.. First experience with hormones and all this madness, I'm really sensitive. I can only accept myself and choose my doctors and therapy knowing this. I wish all the bed and I hope that we can all keep in touch and be stronger together.

    xx

  • Dear Ally, I'm so sorry you are having such an awful time. You are definitely not going insane, all of the symptoms you list are know side effects of Gonapeptyl treatment.

    Gonapeptyl is a "GnRH analogue/agonist" (like Zolodex or Prostap) and it works by suppressing your body's oestrogen / progesterone levels and your monthly cycle. Because of the way in which they work, when you first start treatment you can also get a "flare" of symptoms (heavy bleeding & pain etc.). For many women these settle after the first few weeks.

    However, you definitely should let your Specialist and your GP know asap about all of the severe side effects you are experiencing.

    Many of the side effects you are experiencing: brain fog (memory problems/poor concentration), and mood changes (including depression and anxiety) and others severe joint pain and dysfunctional bleeding are caused by hypoestrogenism (oestrogen-deficiency). Although Gonapeptyl is prescribed specifically to suppress oestrogen levels (and thereby suppress your endometriosis), your body does use oestrogen for other very necessary purposes. This is why so many specialists prescribe Gonapeptyl along with a very low dose of "add-back" HRT, but if your course of treatment is only planned to last two months then that it may be that a complementary dose of "add-back" HRT was not appropriate in your case.

    Regardless, your Specialist and GP really should be helping to provide you with appropriate and effective medical and emotional support to cope with Gonapeptyl's side effects for however long or short the amount of time you are being prescribed it. They should also be assessing (on an ongoing basis) whether Gonapeptyl is working for you or whether you need to be taken off it and offered other treatment options.

    Gonapeptyl is manufactured by a company by Ferring Pharmaceuticals Ltd. You can download their published guidance regarding Gonapeptyl's actions and side effects here:

    medicines.org.uk/emcmobile/...

    I have found that it can sometime help to print this guidance information off and have it with you when you discuss Gonapeptyl treatment and its side effects with your Specialist and GP, as referring directly to the manufacturer's guidance can help keep the conversation focused.

    Sorry that that was a bit of a long reply, but I hope it is a helpful one. And I really hope that things pick up and that you start to feel better soon, x X x

  • NoEndoInSight thank you for your kind reply, with lots of info. I've been researching a lot too. I refused the second injection, as obviously wasn't good for me. And both gp and gynecologist said to me that in 8 12 weeks everything will be alright. But it's not at all. I'm wondering if any of you went back to normal after Gonapeptyl or similar injections. It didn't help at all with the main problem (fibroids) and cause me many other problems.

  • Hello Ally, really glad to hear your Specialist and GP acted quickly to get you off the Gonapeptyl as it wasn't working for you. Sadly I may not be the best position to advise you about how long this kind of drug's side effects might take to wear off. I was kept on them for several years despite an escalating variety and severity of side effects and, although those side effects have greatly improved since I ceased treatment, I am still not back to normal. But I would very much hope that this would not be the same in your case and that you will soon feel like your old self again. Every woman's experience is unique and the "8-10 weeks" guidance is generic - it may be that it is just taking your body a few weeks longer than the average to get back on track. But please do make sure that you still keep your Specialist and GP posted as to how you are feeling even now that you are off the treatment, it is their job to support you through all of this. x X x

  • Hi noendoinsight, how long did you finish your injections and what side effects are you experiencing?

  • Hi!

    I've just read your reply to rajsam. Hope its ok for me to join in? I had add back with my injections thinking things were ok. I've just gone down hill these last two months. I thought HRT was going to help. How are you doing now? X

  • Hi Leese16, sorry my phone is playing silly whatsits and this thread keeps disappearing.

    My main problem actually was that I was put on too low a dose of HRT and suffered quite significantly from the symptoms of oestrogen deficiency (severe memory problems, fatigue, joint and muscle pain, cardiovascular symptoms, sleep disturbances, mood changes just to name a few of the most debilitating ones). But I was on this treatment for several years and sadly on an insufficient HRT dose for most of that time - so my experience is a bit of an extreme on. The above listed side effects all improved when my "add-back" HRT dose was increased, and improved again when I ceased treatment. However, eighteen months after my last injection and I still suffer some residual side effects - my health has not yet returned to its pre-Prostap state.

    The "add-back" HRT dose can take some fiddling about with to get right - every woman is unique and the generic dose a specialist prescribes might not be the right dose for you. Even if it is the right dose, it sadly (like all of these hormone treatments) can take a couple of months for any initial flare up of side effects to settle down.

    However, I did also discover during my treatment that my body does not seem to like synthetic HRT (particularly progesterone) - it gives me migraines, nausea, bloating, breast pain, and irregular bleeding. I suffered this with the combined pill, Provera, and Depo-Provera as well as with my "add-back" HRT. I was eventually switched onto Bio-Identical HRT and I found that that was so much more helpful.

    What brand of HRT are you on? Can you have a chat to your GP and/or specialist about whether you are on the right type of HRT and right dose for you?

    x X x

  • Im on livial. Ive decided im stopping the injections. My moods are very serious now. I have borderline personality disorder anyway and my moods have been scary. Its the hair loss thats the final straw. I asked at my last appointment about mayb changing hrt and they said not too. I just want all this shit out my body. Really i wasnt warned about anything. I went into it all with an open mind so i wasnt sat looking for problems. Big mistake on my part. Im so scared about the effects of coming off them now x

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