Endo, prostrap injections working but what next in my treatment, ablation or hysterectomy?

[Lb2018]

Hi, first time posting.

I have always suffered with horrific periods. It took around 4 years to find a contraceptive pill that relived some of the pain. In between many years of trying to conceive and being diagnoised with endo (three treatments to remove it) I feel I am back to square one.

Since the birth of my miracle baby (naturally after everything we tried 😊) my ordinary pill didn’t work at all, pain and bleeding all the time, it took the go 1year to offer me the contraceptive implant. This worked for 3 mo this then bam bleeding and pain (constantly again).

I had a further lap but only scare tissue could be seen. I went back to the gynaecologist and literally broke down as I felt I was emotionally and physically drained after two years of bleeding and being in pain.

I was given a prostap injection and her tablets that day, I can have six of the injections in total. Honestly they have given me my life back, yes I am moody on some days and have the odd sweet but nothing in comparison to what I was like before the injections!

They have said I need to seriously consider if we want any more children as they can offer me the ablation as a next step or hysterectomy. Obvisoly no more children which ever treatment we decide.We different plan on any more just yet (not even sure if I could get pregnant again after trying 10 years the first time).

Has anyone had the ablation or recommend hysterectomy. I can’t seem to find much help online. I’m 32, and confused I just want to live pain free, not bleed every day of my life and enjoy my family.

Thanks in advance for any advice x

[ccsmith]

Your journey sounds similar to mine I’m 40 now. My last gynae appoint was interesting as I went in begging for a hysterectomy as I’m so exhausted by it now. He was reluctant to do a hysterectomy as the extent of my endo and I’ve got a lot of deposits on my bowel. He advised just having my ovaries removed!! He says if I’m pain & bleeding free on the zoladex & hrt then just removing my ovaries would Work!!!

It’s such a hard decision to make as once it’s out!! But I can’t carry on like this.

Good luck with the decision & let us know how thing goes.

Best wishes Cx

[NH88 in reply to ccsmith]

Im interested in knowing...after removing your ovaries will he start you on HRT? Is this gynaecologist endo specialist?

Estrogen feeds endo....there is no evidence it is the cause. In fact endo is being seen as genetic. Estrogen feeds it. But does not cause it.

Surely if you have your ovaries removed you still need estrogen for muscle and bones so you would have to go on hrt....so how will this sort the endo you already have?

[ccsmith in reply to NH88]

Yes he’s in a specialist centre for endo. He basically advised if I’m good on the synthetic hrt livial & Zoladex together and my pain etc are gone then I will cope with just ovaries removed with hrt. I have extensive bowel involvement & he’s trying to avoid major bowel resection. Im anxious about it obviously but i will end up on hrt whatever surgery I have so the least invasive is a winner for me.

I’m week 2 of Zoladex & hrt and I’m having loads of pain but it’s still too early to tell. Think it took until month 3 last time. He’s my 2nd consultant and sadly they have both were/are reluctant to do a bowel resection.

I can only go on specialist advice and as 2 consultants have both tried avoiding the bowel resection after doing a laparoscopy on me makes me nervous!

[NH88 in reply to ccsmith]

Oh. I guess your lucky in a way, that you know whats going on inside and where the problems lie. I went private and had an endo specialist. He went in blind. He said from my symptoms that there was a high chance that it had attached to my bowel. If that was the case and he had to extract it from that area then if it was over 2cm i would have to have a colostomy bag...even if just for a short period. I accepted it straight away. I had wasted so much time already and just couldnt do it anymore. Luckily it wasnt attatched it was mms away if i had left it any longer i would have had to have had it removed from bowel.

I wish you luck with the meds. Xx

[Lb2018 in reply to NH88]

Oh thank you, I hope your as well as can be with xx

They just keeping me it’s unexplainned as while I’ve had endo treated three time in the past they couldn’t see any new formation of it. It’s all so confusing, time consuming and hard work with no answers x

[Ollysyard]

I am sorry you are going through this hell. I understand how painful periods can be and how much they inconvenience your life. I have decided to have a novasure ablation. For the last 5 years I have suffered with painful heavy periods . I was on the pill for years but came off it as I was 35 and it seemed to me making me moody and kept having abnormal cells bleeding etc.... I have poilp in womb fibroids and look 3 months pregnant even though I work out and eat well. It's up to you but like me you can't keep suffering your missing out on life. I having procedure done on 17 Feb so I let you know how I get on . Take care x

[NH88]

Firstly congratulations on your miracle baby. Its a hard decision to make...especially as how you took so long to conceive your bundle of joy.

The dependency of the answer really is only answerable based on the decision to try naturally for another child...although i can tell that this seems to be a subject that maybe difficult to think of straight away especially due to the 10 years you said it took to get your beautiful baby now...but this is a consideration you need to think very carefully about...what is the percentage of success for a second child now you have had the 1st?

I cannot comment on the ablation...i didnt have it. I can tell you about the hysterectomy if that is what you would like to know about. But as i always inform people...it is my own personal experiences and so dependant on your own medical history may differ if you opt for it.

I am 29 now turning 30. And had my total hysterectomy with oopherectomy in 2016 just after turning 28. I have no regrets with my decision. I done it private. And i dont have children. I now am pain free and have a quality of life i never thought i could have.

No one can make this hard decision but you...so ask ANYTHING you want. No matter how silly you think it sounds and find a gynaecologist who knows about endometriosis in particular.

Here if you want to talk.

Head up and stay strong. Xxx

[clairep86 in reply to NH88]

Can I ask if you were ever given the gnrh injections before your hysterectomy?

[NH88 in reply to clairep86]

I was given prostap injections for 8 months and reacted very well with them. After 6 months its advised that you take hrt with them but i had already decided on the hysterectomy and had booked it so thee was no point in starting the hrt to have to stop before the op.

[clairep86 in reply to NH88]

Thanks. I previously had the injections for 6 months in 2011 they worked great, then the following had very little effect. I started them again in December 2016; they reduced the pain initially but now they have little to no impact, therefore I’m at a loss as to where to go next as my consultant has now said as the injections aren’t working then a hysterectomy wouldn’t either.

[NH88 in reply to clairep86]

As im not medically trained i cant give definate answers....it could be the fact that if it is elsewhere in the body that the prostap may not have the desired affect as it it linked to the womb only.

My older sister had one of the worst cases of endo that her consultant had ever seen. It is stuck to internal organs muscles back and pelvis. She was left to late to be properly diagnosed. She fought for a hysterectomy to no avail until a year or 2 before i went for mine. She has 2 children. They refused her because of her age but she continued on until there was no other option as the lazer didnt work and scar tissue was being caused which doesnt help matters. She has had the full hysterectomy and oopherectomy and although she is still in pain at times she is in NO WAY in as much as she was before. She wasnt trialed on the prostap...otherwise i would have asked her if it done anything for her and i could have let you know.

[Lb2018]

Thank you all for your words, it feels amazing to finally have other people’s advice. My hospital will consider the hysterectomy at a board meeting as it’s all down to funding! The gene is the first I have seen that seems to know what she is taking about.

She said I may still have the pain after a hysterectomy and possible try the ablation first. Can anyone tell me what it means if the prostrap and her is working for me. Is it my ovaries that are the issue. The gynaecologist just said she will put me in prostrap so I can hopefully stop bleeding and be pain few for a few months until further treatment. The injections are working as I have had no pain or bleeding, life has been amazing again for the last two months. No one seems to give me an idea as to what is actually the issue!

We were happy with just our boy but when someone tells you you physically can’t have anymore. It’s a smack in the teeth if that makes sense xx

Thanks ladies x

[NH88 in reply to Lb2018]

I found being on prostap excellent in no pain or periods. I had relief for the first time in ages. I had previously been on the pill but had to stop as it was a possible cause of a blood clot behind my eye.

I was told that if i reacted well to the prostap that a hysterectomy would be a success in terms of pain free. It was basically like a trial of what my body could feel like after.

He reason why you havent been given any clear answer is prob cos its still a researched area. Many arent sure what causes it and how to stop it from happening.

My gynaecologist has been involved in research for it and believes its genetic...which explains why me my older sister and possibly my youngest sister have it. Its a genethat mutates the cells in the womb itself and feeds off the estrogen but is not caused by estrogen itself.

Its hard to be told that the one thing you are expected to be able to do (have children) is something you cant do. Something many women take for granted isnt always the case for other. X

[Lb2018 in reply to NH88]

Thanks for the reply, I’m just greatful I have my boy. My mum suffered the same as me and had the operation in her 30’s, my younger cousin is going through similar to me. I guess I’ll have to wait til April to see if they give me more answers.

It’s confusing with having a full hysterectomy or just ovaries out or keep them business. I feel like I don’t know anything yet I’m expected to make this decision.

The ablation is easier on the body and if it’s sucessful it could last 3-5 years pain free or not work at all. But I did get pregnant after the ablation I Wallis need to terminate as it’s dangerous for both of us.

[NH88 in reply to Lb2018]

I was given the option of ablation with the same as you....3-5 years until it would come back. However there was a chance due to history that it could come back quicker. I have no partner and so the only reason for the ablation would have been to increase time to have the option of have ing a child...which was by no means a certainly even if i had a partner at the time.

I wont lie and say i definitely want children. But knowing there are options later if i decided to be a parent made it easier especially as I dont think i could have been a good parent in the amount of pain i was in....does that make sense? Im lucky to be surrounded by nieces and have a best friend who has 2 girls those life i am involved in.

If i can stress anything to anyone it is the need for you to ask questions. Anything you want to know...ask it, doesnt matter how small you think it is or even how silly you think it sounds. Even if you think the answer is obvious...if you arent sure...ask. if your not convinced ask someone else.

Although being scared of something so definate as a hysterectomy or as uncertain as the ablation...is natural, if you are uncertain too much you will question yourself after the fact.

No one should expect you to make a decision on something you havent got enough information about...or still have questions about. Ask what you feel you want to ask. No one should ever judge you on that.

Xx

[Lb2018 in reply to NH88]

Thank you for your words. It’s so good to hear off people in the same situation. I was told no children if I had the ablation as it’s dangerous for the baby and me so would have to have a termination.

I’m going to try and do lots of research but it’s hard to find the answers you need online. April can’t come quick enough, I just need answers now, it’s like your life is on hold. For now I’ll enjoy the pain free and bleeding free time..

[Tizzyliz67]

Had lap try to clean up and took Fallopian tube out and detached left ovary from intestines. Couldn’t get pregnant had an ablation, best thing I have ever had!!!!!! No periods no cramping love it💕