Please bear with me it's a long post but I could really use some help and advice I have passed a message on to the receptionist for my consultant but I've done this before and not got a reply so not helpful I will this time and now I am just sat worrying...
Around August 2019 I was prescribed four rounds of Clomid at 50 mg I was never offered a blood test or any follicle scans. in January 2020 I had a ruptured ectopic pregnancy and lost my left tube my consultant at the time decided I should have a break so I could heal. So in June 2020 he restarted me on Clomid 50 mg for a further six cycles again I didn't have any blood tests or a follicle scan (I never asked for them As I didn't realise they were an option).
Once I took the six cycles I went to my appointment in January 2021 and now had a new consultant she wanted me to 4 cycles trying 50 MG she wanted me to have a blood test and follicle scan for that first cycle. When trying to book the follicle scan My hospital refused and said it's not something they can do as they don't have the facility. I did however have the blood test which showed I wasn't ovulating so for the three cycles I had left they were upped to 100 MG She did another blood test which shows I ovulated.
I went to my appointment on Monday and she said we are at the end of the road she would give me a further five cycles on 100 MG but didn't need to do a blood test as my previous one showed I did ovulate on 100 MG once the cycles have finished in October 2021 I am to call her office and she will fill in the paperwork for an IVF referral.
After my appointment on Monday I was excited with a plan Clomid then IVF even though I hope it doesn't get that far. But once I got home and started thinking about how I started the tablets in August 2019 an that Come the October 2021 I will have had 19 cycles on Clomid everything on Google and from things I read on here and other sites six cycles seems to be the recommended amount, some put it can be extended whilst changing doses however they prefer not to and certainly no more than 12 cycles due to a slight increase of ovarian cancer. Naturally this has scared me because having already taken 14 cycles on an off and with five more cycles in the pipeline with no tracking! how do I know it's working? how do I know it's not doing more harm than good to my body?
I feel scared frustrated and alone
Written by
Marybeth93
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Hi lovely. I do sorry you are distressed. No real advise but didn’t want to read and run! All I know about clomid is that you shouldn’t use it for an extended period of time. 6 cycles I thought. I am sure I was told that it thins the lining too.
Do you have to stay at that clinic?
Have you both had all the necessary tests.
The situation you describe doesn’t sound very thorough no wonder you are distressed.
How old are you? Are you doing this privately or NHS?
Let us know. I am sure the ladies will respond soon with more knowledge. Just hang in there... this is a bloody rollercoaster
Hello thank you so much for replying, sometimes its nice to not feel like your alone.
I've just been sat here getting myself worked up called my mum and husband who are at work i was crying but I've settle down now I called care Sheffield who are private but I think you can also go to them for IVF on the NHS and she seems really nice she couldn't comment too much because she doesn't have my file ect but did say it seems a lot of Clomid.
Its on the NHS so when my doctor referred me to the hospital back on 2019 I assumed my consultant would know what was best for me. I'm not sure on the side-effects of Clomid and the fact I've had 14 cycles of it and potentially another five I'm worried it's doing more harm than good.
I'm going to be 28 in June it really is a bloody rollercoaster! When we first got referred to the hospital they did a dye test blood tests and seamen analysis, But other than two blood tests I haven't had anything since starting the clomid.
Bless you lovely. The good news is that you are young and have time to get this right. ✔️ The two tests were to check your tubes and the sperm parameters. (If those are ok) then maybe just skip the clomid and go to IVF.? When is your next consult? Will the doctor call you today?
I think I'm gonna ring again and just keep ringing. On Monday she said I wouldn't have another appointment with her I will take the five rounds of Clomid and then if I called a receptionist she would pass the details on and they will do the IVF referral
Hey I don’t know the effects of so many clomid cycles but I remember me consultant saying if it hasn’t worked In 6 cycles then it was unlikely to which is why Nhs usually do max 6. I was offered clomid whilst on the waiting list for ivf (6mths)and we had unexplained and my tubes had been checked. Although the meds were free as tablets are cheap the nhs didn’t offer scanning you had to pay for it. We did and ended up only doing one clomid cycle as although I had a follicle growing it had a negative effect on my lining so I they recommended moving to injectables these we also had to pay for. Which we did for a few months before my ivf. You should definatly be monitored as there is a risk of multiple follicles growing .
Wow, I never heard of a clinic not monitoring anything on clomid. Is that legal? If 6 cycles didn't help, you should have moved on to a different treatment for sure. This lack of monitoring is pretty much comparable to you just buying clomid somewhere and taking it for a year without any medical supervision... scary.
I feel like it's my fault for not asking but I never knew you were supposed to have a blood test and you had to have a scan having never been in this situation you assume they do all the steps. it was only when the new consultant offered me a scan and said I needed one and a blood test that I thought oh she must know what she's doing. But then my hospital said they don't do the scan and refused to give me one. They did a blood test and i didn't ovulate on 50 so agreed 100 did a blood test and because I ovulated nothing further is happening. I've had 14 cycles on and off so far and I've picked up tablets for a further five cycles, I don't know the side-effects and I'm scared to take them now. When I found out I was having clomid again I was excited because it meant IVF was five months away and I feel IVF is so final and our last chance but now I'm thinking she needs to just refer us for IVF which scares me xx
If I were you, I would not take any more of clomid, especially with the lack of basic monitoring. Focus on staring IVF and getting the necessary tests done before hand. This forum is great regarding information because unfortunately some clinics are just crappy and we women have to advocate for ourselves. You wasted 14 cycles not even knowing if you ovulate or not and if yes, when.... and how many follicles you have each time. You went through all this and you are basically walking away with 0 information.
Thanks you, God its such a stressful journey as it is!
I called the receptionist again and I've got to go pick up a letter about the clomid and the side effects she says its my choice if i want to continue the 5 cycles if i dont want to then call her an she will refer me for ivf
When we first had issues we were referred to the NHS, tbh apart from them checking my tubes and outside of my uterus. The clinic was pretty shocking!!
I had bloods done, just the normal ones like AMH and full blood count, thyroid etc. But other then that all the consultant did was do an internal scan to check my lining and prescribed me clomid for 6 months. When that didn’t work he prescribed me another 6 months worth and said we can’t do any more for you, your unexplained the clinics shutting down so you need to go private
When we went to the private clinic (which you do not need to be referred to by a doctor, you can self refer, if you LT not private already) she questioned why I had been put on clomid as there was no evidence that I wasn’t ovulating!!
So like you god knows what it was doing to me!!
I was under the impression it was a maximum of 12 months, if required longer you’d need some kind of monitoring, but I
Never read what the issues were with it.
You won’t know if it’s working or not, like us we had no idea, I call it the NHS fob off!!
If I were you, I would ditch the clomid plan, sorry to be brutal but it clearly hasn’t worked despite all these months of using it!
Dare I say it get into the private system and start having some proper investigations and a proper plan of action!!
If the dr had just prescribed more of this stuff and doesn’t see you for monitoring or at the end just reinforces my theory it’s a fob off!!
It frustrated me as I could see all this time wasting, loosing time for us and I was older at 37/38
I'm sorry to read you at such a shit time as well. after having a meltdown worrying an crying today i called my doctor several times an they are now writing a letter for me to go collect tomorrow or Friday the receptionist said the letter basically says the risks of clomid and that its up to me if i continue the next 5 cycles on it. If i don't want to then to call her an she will put the ivf referral though immediately. So now I'm scared to take more clomid and I'm also scared i could now be at our final option which is ivf when i thought we had more time. So i don't no what to choose 🙈
I'm going to ring the two centres that do it on the NHS and see what they think I only finish my last round of Clomid yesterday which in theory give me another month to have a lick breathe a little and try not to put on weight panic eating
Hi, sorry you have had such a stressful time. Unfortunately some of the specialists have no empathy and it makes it all harder. I was told that you should not have any more than 9 rounds of clomid, I had all 9 rounds but after that they couldn’t give me any more. They did do scans the first 3 times and once they had confirmed that the cloud was working the specialist said I should continue and see what happens. After that didn’t work they said it would have to be IVF. UnfortunatelyI have other complications, I have high prolactin levels which means I am also under a endocrinologist, and they have no sense of urgency! I am now 6 years down the line and finally being referred for IVF but have not been offered the Clomid again. Talk to the specialist and ask her to refer you and ask if there are any other tests you or your OH should have. Good luck!
It’s hard as it is long and emotional, filled with ups and downs. Focus on being healthy, taking your supplements and don’t be put off by their rudeness. I let them do that to me for a year or two but tbh it didn’t help. As for losing weight, I hear you, I am working on losing a couple of kilos which is hard when all I want to do is eat cake due to the weather 😃
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